40th Post – The World of Tamoxifen Begins 26.02.2014

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Today I took my first dose of Tamoxifen.  I’m taking it in pill form.  I’m to take just half the dose from now until I finish Depot Lupron in June of this year.  Depot Lupron is the injection I’ve been having since June 2013 that keeps my ovaries asleep and puts me into a temporary menopause.  I will stop taking Depot Lupron around June 2014 and then I will up my dose of Tamoxifen to a full dose.  During the next few months that the two drugs are overlapping, I was told to expect worsened hot flashes.  Yikes.  Just when they were feeling a lot more calmed down, they’re now expected to get worse again.  I’m glad this won’t be happening in the middle of summer though.  Last summer was tough on the hot flashes.
 
You know when you get a prescription for a medication it reads something like “Take 1 capsule 2 times daily for 15 days“?  It’s usually always along those lines…at least from my experience.  Then I get the Tamoxifen from the pharmacy and the printout for it reads “Take this medication by mouth with or without food, usually once or twice daily for 5 years, or as directed by your doctor.”   For 5 YEARS.  It feels weird to read that about the drug I’m just starting to take.  5 years seems like such a commitment.  I’m not saying I’m going to stop taking it, it’s just a bit weird because over the past year there hasn’t been much thought about what will be happening to me in 5 years.  So it kind of feels nice to know that something is going to be there as a constant in my life for the next 5 years.  Maybe this will be the start to some stability in my life.  I sure hope so, because I am so fed up.  This is also the beginning of my first longest relationship.  My first longest relationship (except friends and fam) is with a drug that is supposed to prevent cancer from coming back and getting me.  That’s a weird thing.  I wonder what things will be like for me in 5 years from now.  A lot has happened to me in the past 5 years, maybe a bit too much.  I am assuming I won’t be bald in 5 years.
 
Tamoxifen is an estrogen blocker.  I don’t know much about it yet.  From what I’ve heard, my body will make estrogen but the Tamoxifen will block it from doing things, especially cancer.  I guess it’s like a goalie.  I’m told that I may or may not get my period while on Tamoxifen.  I haven’t had my period since I started Depot Lupron in 2013.  I know you’re thinking that that must be really nice to not have to deal with periods anymore.  But NO!  I would so rather have periods over menopause.  With menopause I feel like I’m back in a teenager’s irrational puberty riddled mind; annoying and unpredictable hot flashes that I can’t take hormone supplements for because the cancer was hormonal; no existence of short-term memory; dry skin and a dry vagina.  So yes, I would gladly take periods and PMS over menopause any day.  You lucky people.  Yes, so I stopped my period in the summer.  I might have it back again while on Tamoxifen but I won’t know until I’m at that point.  
While being on Tamoxifen I can’t get pregnant.  Or I think it’s physically possible, but not recommended…because I guess they can’t force someone to have an abortion if they get pregnant while on Tamoxifen.  I don’t know.  I’m not going to get pregnant while on Tamoxifen.  It also dries out and thins the vaginal walls so sex may be really painful.  It’s like I’ve graduated from my 20’s and have been immediately shot up to being 80 years old.  The doc did mention that we will see how things go and then he may allow me to go off Tamoxifen after 3 years, I could pop my minions out of the freezer and get pregnant and have a baby, and then go back on Tamoxifen for 2 years.  It’s not recommended to breastfeed while taking Tamoxifen, but I don’t have to worry about that because I obviously won’t be breastfeeding from myself.  There is lots of time before I’ll know if I’ll do the 3:2 option instead of the 5.
 
I’ve also heard some horror stories about Tamoxifen.  About vaginal walls getting so dried out that they can start to stick together and the person would then maybe need surgery to open it up again.  Holy hell!  That sounds terrifying.  It would probably hurt to do anything…sit, twist, workout!  They say to use lube or a vaginal moisturizer, basically daily, to help prevent a super dry vagina.  I’ve heard of a vaginal moisturizer thing that post-menopausal women use that also has a hormone in it.  I’ve heard that it works well, but unfortunately I won’t be able to take it because of the hormones in it.  I’ve also heard of something similar called Replens.  Replens doesn’t have hormones in it, but I heard a bad story about it so I’m hesitant.  I will probably try it if I need it, and decide myself how okay I am about using it.  
 
All the side effects of Tamoxifen seem to be pretty hit or miss with each person, so I just have to wait to see how my body reacts to it.  I hope it all goes well and I can have sex.  I also wonder if there is bone density loss with Tamoxifen.  I see my favourite doctor next week, so I will find out about that then.
 
The first dose of Tamoxifen.  1 down, 1824 more pills to go.  No, I can’t just take them all at once.
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39th Post – Got Boob? 25.02.2014

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To an extent, I’ve been feeling pretty comfortable without breasts.  I would still prefer to have real natural breasts, but that isn’t an option.  The best thing about not having breasts is that running is so easy.  No giggling, bouncing, or that strong stinging pain you get from a rigorous run while wearing the wrong bra.  Now that the boob bouncing is gone, my attention really goes to all the other areas that bounce….like my bum, the sides of my waist.  Also the backs of my upper arms, but I think that that’s because I have weird and uncomfortable nerve pain in that area.  So sometimes when I run it feels like someone is slapping the backs or my arms.  Oww.  So running gets two thumbs up.  

 
I thought that I would be able to sleep awesomely on my stomach.  I’ve found out that that isn’t really the case.  The tissue on my chest and around under my arms feels strained and sometimes painful when I try sleeping on my belly.  I think it’s because it’s still sensitive from surgery.  I’m guessing it would feel fine after a few years.
 
I love being able to put on a top and not have to worry that I’m wearing the wrong bra for it and trying to rummage around to find one that is okay under that top.  Because when you buy a new top you don’t always think about how you’ll handle the bra situation with it.  And sometimes you throw out a bra and then realize that it was the only one you could wear under certain things.  So it’s nice that I can now throw on a shirt and not fuss about the bras.  
 
BUT, my biggest annoyance with all this extreme flat chestedness is that there are so many things that I look just ridiculous wearing.  It’s a huge frustration for me.  Most of my previous clothing I can’t wear for some reason or another.  Necklines hang a lot lower when the boobs are gone.  And that’s a problem because I don’t have any feeling on the surface of my skin there, so I can’t feel that my shirt is hanging way low and that it’s over-exposing my scars to the world.  And it just looks like the neck of the shirt is massively stretched out.  (I work in clothing, so I do sometimes get fussy about these things…especially with being a quality checker/controller at my 4 past jobs, it’s makes me into a big anal person about these frivolous things). 
 
To avoid the stretched out neckline, I need to go with something higher.  At that point, styles get their necklines pulled up a bit more than one would like if they are flat chested, because it honestly makes you look like a child.  And that looks fine on a child, but at 28 I do not want to have a child shaped chest.  It’s different than a woman with just really small breasts because a child chest is more curved and basically their torso is a cylinder.  I am a cylinder.  
 
There are just so many things that are very difficult with clothing.  And since I don’t like to wear tops that have an emphasized raised waistline with a puffy chest made of gathered fabric, I am not going to start wearing them now. Definitely not for me.  Scarves help.  I wear scarves a lot anyways.  They are good at camouflaging the chest situation.
 
After I finished chemo in the autumn, I decided to carry on and do radiation.  I would like to have breast reconstruction in the future.  But with radiation, the patient has to wait at least a year after they are finished radiation before they can begin reconstruction.  This is because the skin moves around a lot after radiation and hasn’t settled completely in that first year.  So if you had surgery within a year after having radiation, the immediate result may look good, but then it can slowly start to shift around and suddenly you have one boob up here and the other down and around a corner.  I’ve seen photos.  Legitimate photos.  (the around a corner is obviously an emphasis on my part).  Since I just finished radiation last week, I am looking at a full year of continuing to be completely flat and not being able to wear most of my clothing.  I can only carry on like that for so long.  Especially now that I don’t have breasts, all I do is fantasize about wearing any type of bathing suit, bra, low cut dress and shirt.  Like the more you can’t have something, the more you want it.  So once I decided to do radiation I also decided to get breast prostheses.  
 
I went to the boob shop at the beginning of December to shop for boobs.  I just wanted something as similar to my real breasts as possible because I want to be able to fit into my clothes.  Boobs are expensive.  Breast reconstruction surgery is covered by the health care here.  But for the prostheses, the patient pays for it all up front and then is later partially reimbursed by the healthcare.  
 
The whole process was long.  There were mixups with the products and the manufacturer, plus Christmas and New Years delays everything.  I don’t think the process would usually take this long, so don’t worry if you are wanting to get some prostheses yourself.  And I would recommend going to the place I went to.  The woman there is very kind and helpful, and the setting is comfortable too.
 
After Christmas I had a FINISHED CHEMO PARTY.  I wanted to celebrate being done chemo.  It had felt like a really long haul since my diagnosis in the middle of May until Christmas time.  It’s like you’re swimming and you start going under a lot, but you’re able to come up to the surface for just long enough to grab a biggish breath before getting forced under again.  Over and over again.  So finally I was starting to feel a little wee teensy bit better, so I had a party to celebrate that.  The party had a theme (of course).  People were encouraged to come dressed in any or all of three things….Animal Print, Sparkles, and Neon.  Best theme ever!  There were friends there of all ages and some really fantastic outfits.  If you know me on FB, then you would have seen some photos from the party.  And if any of you reading this who were at the party and took photos, I’d love to see them.  Send them along if you’d like 🙂
 
At this party a lot of you were so great and contributed to help me pay for my fake boobies.  Thank you all so much for that.  Although cancer treatment is covered by the healthcare, there are still so many expenses because of the cancer and the treatment.  So it was really great that you were able to help out.  It makes a difference and I appreciate it more than you know.  The money that you helped chip in with went towards the cost of paying for the expensive prostheses.
 
And now, just a few days ago the breast prostheses arrived.  Finally!  The radiation has made the skin on my chest and armpits to be a sore mess, so I’m not able to wear them yet.  But I did put them on for a few minutes to try them out and take a photo.  I am so impressed by them.  I love them!  I think they look great.  And if I hadn’t have known when the photo was taken, I would have thought that they were my real original breasts.  The fake boobs don’t give me any cleavage at the top of my chest, but I never had cleavage there before anyways.  Some people have cleavage there.  
 
I know you think they look awesome, and now you kind of want a pair yourself.  And they feel pretty darn real too.  I can’t wait to walk around with my boobs and stick out my chest.  Actually, they’re probably more natural looking than if when I am to have implants from reconstruction.  But with reconstruction I can show some cleavage.  With the prostheses I won’t have that.
 
And I didn’t reread all of this.  So there are probably mistakes.  I am too tired to care.
 
Here’s the photo.
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And here are photos of the front of the prosthesis, the back, the side, and with both of them in a special melon hammock bra.
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38th Post – Ringing Out Radiation and 9 Months of Cancer Crap… Photo 19.02.2014

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38th Post - Ringing Out Radiation and 9 Months of Cancer Crap... Photo 19.02.2014

If you weren’t totally convinced yet that I’m a very un-photogenic person, here’s the proof. I love it though. It’s a good face for ringing the bejeebers out of the bell/triangle at the end of radiation and end of 9 months of cancer treatment.

Today I was lucky to have my sweet friend, Jules accompany me for my final appointment and witness my bell ringing. Thank you so so much Jules!

37th Post – Done and Done…Now Wait. 18.02.2014

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Tomorrow is my last day of radiation. I get to ring the bell at the end of it.  The bell signifies the end of radiation treatment. This is a different bell than the one I rang at the end of chemo…different clinic.

Tomorrow is also the last day of my 9 month long cancer treatment. 9 months!  Long and intense and fucking awful. I was diagnosed 9 months ago and began treatment a few days after that.

It started with fertility treatment, egg extraction and freezing, complications of fertility treatment resulting in a rough case of Ovarian Hyperstimulation Syndrome(OHSS), starting on Depot Lupron which places me in an artificial and temporary menopause but with real and intense menopause symptoms.   Then double mastectomy, 2/3 of my lymph nodes removed because the cancer had spread to them, getting a PICC line (port) put in me for administering chemo, chemo, positioning tattoos for radiation, radiation, horrible emotional strain, needles needles needles, my body becoming an object of science and math, tons of side effects from every step along the way, stress, worry, anxiety, job loss, medical tests and scans, hoops of service office and paper work to jump through, financial strain, feeling like my body aged 60 years in a short time and then slowly bringing it back to it’s proper age and functions, life being put on hold for an indefinite period of time.  I could go on and on.

Nine months done. That’s it for cancer treatment, except for Tamoxifen. I begin Tamoxifen in a week and I will be on it for the next 5 years. It blocks estrogen. The tumours I had were from estrogen. And there’s also still lots of follow ups. The follow ups are still pretty frequent.

So although the bell at the clinic tomorrow is for being done radiation, it is also for being done cancer treatment.

Unfortunately there’s lots of waiting left to do. Waiting until I can get the go-ahead from doctors to start my life again. Waiting for tests to come and their results. Waiting to start drugs and stop others. Waiting til I can do normal things again, like work and dating and running around topless all day at the park (haha I wish). Waiting til I can move to a city and not be concerned that my doctors aren’t living there too.  Waiting to meet with surgeons. Waiting til I can get reconstructive surgery…I need to wait at least a year from when I’m finished radiation because the skin contorts. Waiting til I stop Tamoxifen. Waiting til I can get pregnant (I can’t be pregnant while on Tamoxifen, unless I want children with super powers).

This takes so long. It would have been so much easier for everyone involved if the doctors had just physically examined me on any of the occasions that I begged them too, and diagnosed me properly the first time. How lazy can they be?  Do doctors and clinics actually practice  “early screening”?  Or is all the talk about it in the pamphlets, commercials, and the news just “talk”?

36th Post – Beginning Radiation 13.01.2014

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Tomorrow is my first day of Radiation.  I decided to do it.  It came down to this… at my current state with having surgery and being post chemo, I have a 30% of recurrence in the chest and armpit area of my body.  With radiation that chance drops way down to 5%.   wooohoo!  That’s just for recurrence in the chest/underarm area though.  I still have a higher chance of recurrence than 5% elsewhere in my body.  I don’t know what the exact figure for that is, and I’d rather not know it right now.  But it seems the doctors are more concerned about the chest and underarm area anyways.  The chest region because of the tumours that were in my breasts, and the underarm area because I had 2/3 of my lymph nodes removed from there because there was cancer in the first lymph node in each armpit.

It is still believed that I don’t currently have cancer.  All treatment post surgery is in case there are tiny stray cancer cells hiding out in me.  If there are or were any stray cells, we have to get rid of them and not let them develop.

They wanted to do radiation on me because although I had chemo, my lymph node ducts are damaged from some of my lymph nodes being cut out during my operation.  With the lymph node ducts being damaged, it is more difficult for the chemo to penetrate the remaining lymph nodes and treat any possible stray cancer cells there.  So then they do the radiation to help be more thorough.

I start radiation tomorrow and it goes for 5 weeks.  It’s every weekday, not weekends.  I’m told it can cause fatigue, but it isn’t supposed to be as exhausting as chemo.  And at least I won’t be hurling my guts out and have to be hooked up on an IV in my own bedroom and have to take a library’s worth of drugs for the side effects.  No.  That was chemo.

I haven’t been writing on here since my final chemo.  I slowly started to feel better after that last dose and so I was just eager to do more things that I couldn’t do before while I was rough from the chemo.  It took a while.  The effects of chemo were accumulative, and so a few weeks after my final dose I was still worn out.  From each chemo dose it took me longer and longer to bounce back from it.  As soon as I was feeling well enough do to it, I went away for a few weeks to visit family and friends nearby.  And for the first time in a long time, I had a couple weeks in there where I didn’t have a doctor appointment.  Freedom!  And then it was Christmas season and so on.  So that’s why I didn’t write on the blog during all that time.

I’m now also able to walk up the hill at home.  I stopped being able to do that in about mid October.  It’s not a big or long hill, but I wasn’t able to do it because of the muscle fatigue and pain I’d get.  Now I can run and hoist myself up that hill quickly.  Not run up the hill though.  It’s exciting to be able to do basic things again.  And when that’s happening, I really can’t be bothered to keep up with blogging, emailing, etc. 

I was also able to shower again freely….until now.  In the Radiation pamphlet they gave me at the hospital, it says that I’ll have to be careful with my chest and armpits while doing radiation.  No extreme temperatures, and no direct water shooting out from the shower head.  And also no washing the area with a washcloth.  Perhaps a bath is fine.  In all this stuff over the past months, difficulty bathing for various changing reasons is one of the most annoying outcomes.

 
I’ve decided to stay in the city at the hospital during the course of radiation.  I’ll be in there Monday to Friday and be home or elsewhere on the weekends. 

For years I’ve had a tattoo.  One tattoo.  Then just before New Years, the hospital phoned and asked me to come in for a CT scan so that they could start mapping things out for my radiation treatment.  I went and did the scan and came out of there with another 6 tattoos.  From 1 tattoo to 7 in 60 seconds.  They tattooed me for radiation.  Who knew?  They are small black spots.  They aren’t small enough though.  One is smack in the middle of where I would have cleavage, if I did have cleavage.  From now on if I wear a low cut top (which I hope to be able to do again in the future), people will probably think I either have a pen mark on my chest or a massive black head.  Too bad they didn’t have other ink colours up for option.  A freckle colour would be a good idea.  Maybe I could get a lighter ink tattooed over top of it once I’m done radiation.  Another tattoo dot is placed 8cm below the cleavage tattoo, between my ribs.  Another is beneath my armpit at the side of my torso, and another one is lower down from that one.  And two again on the other side of my torso.  I’ll get a photo of them as soon as I can find a camera around here.

34th Post – At my Final Chemo I broke the FINISHED CHEMO BELL! Jeg er så sterk! 03.11.2013

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I am finished chemo.  I had my final chemo dose 2 days ago.  Now I have another 3 weeks of dealing with the side effects, and then after that I am hoping that it will only be uphill from there.

The day after chemo my side effects already started to kick in.  That’s the earliest they’ve surfaced while on Taxotere (the current chemo drug I’m on).  My mouth is already starting to become bothersome and my taste buds are disappearing quickly.  Usually I’d have about another 4-5 days before that would even begin to happen.

While at the chemo clinic two days ago, I had my chemo dose.  Hands and feet in the ice mittens and slippers, then into ice buckets when the mittens warmed up too much and there weren’t any more cold mittens available.
After I was finished getting the chemo pumped into me through my PICC line, the nurse began to remove the PICC from my arm.  I’ve had the PICC in my arm since after my first chemo dose, 2.5 months ago.  The PICC was very irritating for the first month.  There was trouble inserting the PICC into my arm.  The nurses had to do it a few times and it caused a lot of bruising.
I had a plastic sticker covering the whole PICC area on my arm for these past months.  I wasn’t allowed to get it wet, although it did get a little wet at times from bathing.  Whenever I took a bath, I’d have to hold my arm out of the water.  If I took a shower, I’d have to wrap my upper arm in plastic kitchen wrap.  It would still get wet when I used the plastic wrap, so I gave up on it and would instead wrap a dry towel around my arm.
Here’s a photo of me holding the tube that had the chemo going into my PICC in my arm, under my sleeve.
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Here are some photos of me with my Mom.009002013018
I filmed it while the nurse removed the PICC.  It took longer than I thought it would and so I didn’t finished filming the whole thing.  I didn’t want the battery and memory card to run out on the camera.
The PICC line began to come out easily, and then it sort of got stuck.  The nurse said that it was fairly common and it was caused by the vein contracting.  To help the PICC along, the nurse places warm blankets on my arm for about 15 minutes, and then comes back to it to try to remove the PICC.
After I stopped filming, I had warm blankets on my arm for 15 minutes and then the nurse pulled the rest of the PICC out fairly easily.  She then put a band-aid/plaster thing on it and told me to keep it on there for 24 hours.
I wasn’t able to upload my videos here.  So instead I’ve put them up on Youtube.  Here are the links to it.  There are two separate videos.
*Video part 1 – http://www.youtube.com/watch?v=hxnXcRHqI4k
*Video part 2 – http://www.youtube.com/watch?v=-sJA5IrgerQ
After 24 hours of the PICC being gone, I took off the plaster and had a bath with my arm in the water! 🙂  The hole where the PICC went in is healed over already.  I can now go swimming, go in hot tubs, and bathe freely.  Here’s a photo of my arm 48 hours later.
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When I was done with all the chemo and PICC stuff, I was able to ring the bell.  The clinic has a bell that the chemo patients ring once they are finished their final chemo treatment.  I guess I rang the bell pretty hard and I broke it.  I ripped it right off the wall.  So, if you are at the chemo clinic and the bell isn’t fixed yet in time for you to ring it, I am very very sorry.  There is however an alternate hand-held bell that you can use in the meantime until the regular bell gets fixed.
Haha, I broke the bell.
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