Some break ups are harder than others. :)

***Note**** This post contains personal female discussion. You've been warned. I've finally reached my breaking point. At approximately 21 months of insane and out of control menstrual cycles, I've had it. I can't deal with it anymore. Today I made the call to the gynecologist in Hamilton that agreed to give me a Hysterectomy and made the appointment to sign the papers. So, on Oct 5 I will be signing on the dotted line to get this thing done, but I'll be keeping my ovaries so as to not induce surgical menopause. I don't like the idea of major surgery unless it is absolutely necessary, but at this point in the game, I'd venture to say it probably is. I still have my Dr pushing iron supplementation at me due to my wavering anemia, and I know when it's low due to being extremely fatigued, so I sign the papers on Oct 5, but I don't know when I will have my surgery. I kind of want it after my MRI on Nov 7, so I'm not having any issues getting up and in the machine, but I also don't want to be "out of commission" for Christmas. Ahhh. Life. Kicks you in the ovaries every time.

~Tara

Who knew?

I'm learning new things each and every day regarding living with a brain tumour. The one thing I assumed, and incorrectly apparently, was that side effects from treatment would be immediate or within weeks, I mean things have to manifest quickly, right? I mean, I know they can stick with you for a while, but surely they aren't going to pop up a year or two down the road, that would just be ridiculous. It turns out that with any cancer treatment, if you're one of the lucky ones to get years, that side effects can indeed pop up months or even years down the road. And the side effects may not be what you expect.

I have many of the classic side effects from  surgery, chemo and radiation; hair that won't grow back in certain areas, seizures (although quite controlled right now), memory issues, vision issues, hearing issues, comprehension issues, etc. And I'm also battling this "woman issue" of mine. My Drs (all male) seem to think that early menopause isn't a side effect of treatment, despite what I've researched and read in many places, including Columbia University Medical Center's Department of Neurology website. But I digress. For the last 10 days or so, I've been experiencing some swelling in my lower legs. Nothing too massive, but something that made me take notice. So I checked in with "Dr.Google" just to see what can cause this type of thing, as it's never happened to me before. I learned that brain tumour patients are at a high risk to develop DVT, or Deep Vein Thrombosis. Not cool. Now I don't want to become a hypochondriac and think that everything is happening to me, or something I have, so I kind of filed it away to the back of my brain for general knowledge that's good to have. I started icing my legs in hopes that it would bring the swelling down and crossed my fingers. Just my luck......it got worse. lol And now I have edema in my ankle areas so severe that you can press on my bones and a large indentation will appear and stay. So, not wanting to be a hypochondriac, but realizing that I live a "new normal," I packed up and went to the ER. Thankfully, the hospital totally "got it" and took it seriously. When the Dr saw me, he said that while he doesn't think it is DVT, he wanted to be 100% certain considering my risk factors. So I had bloodwork and ultrasound done. Thankfully both came back negative and I was able to come home, and tomorrow I meet with my family Dr to see what exactly is going on.

~Tara

MRI Results - Next scan in 6 months

I can't believe I forgot to update everyone with my MRI results. Actually I think I called most people this time around. lol Thankfully it was "no evidence of disease progression", that means my next MRI is in 6 months. November 9 to be exact. Now I just need to behave in the meantime. :)

~Tara

 

What can I say. I'm stubborn.

I know I'm stubborn; I am a Taurus afterall, and so far in life it has served me well to be so. I've been dealing with anemia since about January 2015 when my ferritin dropped down to around 5, and every Doctor has been pushing iron supplements at me ever since. I don't fault them because it's what they know, it's their field and as patients we go to them looking for help. I've politely told them that I need to do things my way knowing that it will take a bit longer to achieve. A thanks but no thanks approach is what I've taken to their suggestions on iron, they know why, and most people reading this do as well. I had some blood work done yesterday, and here are my comparisons from that and my initial blood work done 5 months ago when I first met with my new GP. Things are going in the right direction.

November 17,2015                                                 April 22,2016

WBC: 5.8                                                                 WBC: 7.4
RBC: 3.87                                                                RBC: 4.40
Hemoglobin: 100                                                     Hemoglobin: 117
Hematocrit: 0.32                                                      Hematocrit: 0.36
MCH: 25.8                                                               MCH: 26.6
RDW: 15.5                                                              RDW: 14.7
Ferritin: 8                                                                Ferritin: 15


The only one going down is the RDW, but that's actually supposed to with the optimal range being 13. However, everything else is going up, albeit some slower than others. I am achieving the results I am intending to without the use of iron supplementation. For reference for anyone who may want to know what normal is for themselves, here are the ranges below for the above blood tests.

WBC: 4.0-11.0
RBC: 4.00-5.10
Hemoglobin: 120-160
Hematocrit: 0.350-0.450
MCH: 27.5- 33.0
RDW: 11.5-14.5
Ferritin: 10-291

On that note, I have my MRI tomorrow morning with results on May 5. So lets hope my stubbornness translates into good results there as well.







~Tara

Next MRI

Well, my next MRI is April 24th, and I meet with my Oncologist on May 5th for the results. I also meet with my Neurologist that day to discuss my seizures, though I'm good on that front. My anemia is borderline, meaning I'm teetering at 7-9 while anything under 10 for a woman is anemic, so I definitely have to address this with them in May. My other issue has improved drastically. My Mom tells me that just the thought of surgery scared my body. haha. I say there was truth to my Vitamin D and Vitamin C intake, but what do I know, it's not like I'm a Dr. :) Having said that, I also am hitting the gym with the hubby. That can only be a good thing. Time will tell, and in about a month or so, I'll know what's going on in my head. This time around.

~Tara

At a crossroads

It appears I’m at a crossroads. I've been anemic about a year now, and my Dr has wanted me to use iron supplementation to bring my ferritin levels up. However, I've read extensively on iron supplementation and learned how it effects tumour growth which has influenced my decision to not partake of them. Studies have found that iron feeds tumour cells. Tumour cells and bacteria need iron to grow, and your body tries to starve them of iron by diverting the iron from the blood to storage sites deep within the tissues. It is well known, biochemically, that if you add iron to tumour cells in cultures, they grow at a much faster rate and that breast cancer cells thrive on iron. In fact, a true anti-cancer diet that is suggested while going through cancer treatment calls for a patient to cut out red meats and animal products entirely. Iron rich foods should be avoided, as the excess iron creates cancer-causing free radicals. 

 

Today, however, my Dr informed me that my blood cells are now taking a hit. They are shrinking and brittle due to the damage being caused by my low ferritin levels. Okay, I know what you’re thinking: Back away from the kool-aid, Tara, and take the damn iron. I wish it were that easy. It’s really hard being faced with what are literally life altering decisions, that for so many reading this is nothing more than adding a pill to their morning routine without thought. Sure, I can take the supplements and boost my iron, but I’m gambling with feeding an already present tumour if I do that. Or, I could ignore supplementation and “try to bring my iron up on its own,” but we see how well that’s worked for me. The problem is that if it gets too much lower I will more than likely be forced to have iron via IV and that would be worse on so many levels. Not to mention a hell of a lot more dangerous. 

*This photo reflects how I feel with every decision I have to make along this journey.

~Tara

Chemotherapy, the overlooked puzzle piece?

When I first met with Dr. Doom, excuse me, Dr. Torres, the Chemotherapy Dr, back in July/August of 2014 he was pushing what I guess he thought was best for me even though I wasn’t compatible with the drug. There was so much happening at that time, so many papers to sign, so many people telling me so many different things and what the potential side effects were to treatment that I really didn’t process any of it. I just signed on the dotted lines and away I went into treatment. I do remember him vaguely asking if we wanted to have children, because if we did then we should freeze my eggs because of what the chemotherapy will do to me. I didn’t really bat an eye to that because anyone that knows me knows that the inability to have children would actually be a selling point of a procedure. Lol, I kid. I kid. ;) But during that extremely emotional time while making huge life impacting decisions I didn’t really think of too much. Like, if the Dr is telling me that I should freeze my eggs because of what this drug will do to me, what else is it doing to my reproductive organs? 

Well if you’re reading this blog posting, you have more than likely read my other blog postings and you know what I’ve been going through for the past 12 months or so with my bleeding. My erratic there-is-no-sense-to-this bleeding. 60 days of straight bleeding here, a day off there, 40 more days of bleeding, to the point I begged for a hysterectomy and was given the opportunity to have one. One that I cancelled due to going into an essential dry spell of 40 days of no bleeding. Which isn’t the first time this has happened. So, like I tend to do, I laid in bed last night, phone in hand, researching the hell out of what is wrong with me. There has to be something wrong with me. It’s GOT to be hormonal. There has to be a reason that I feel like I’ve entered perimenopause, despite the fact I shouldn’t be for another 10-20 years. And then I found it. I guess it doesn’t take a lot to excite me, because I was pretty excited when I read that the chemotherapy treatment that I had undergone could actually be the culprit of this. From the American Cancer Society.

Chemotherapy:

Most chemotherapy (or chemo) drugs can damage a woman’s eggs and/or affect fertility. (Remember a woman is born with all the eggs she will ever have and they’re stored in her ovaries.) The effect will depend on the woman’s age, the types of drugs she gets, and the drug doses. This makes it hard to predict if a woman is likely to be fertile after chemo. The chemo drugs most likely to cause egg damage and infertility are:

· Busulfan

· Carboplatin

· Carmustine (BCNU)

· Chlorambucil

· Cisplatin

· Cyclophosphamide (Cytoxan®)

· Dacarbazine

· Doxorubicin (Adriamycin®)

· Ifosfamide

· Lomustine (CCNU)

· Mechlorethamine

· Melphalan

· Procarbazine

· Temozolomide

After chemo, fertility may not last as long: Girls who had chemo before puberty (the time when periods begin) or young women whose menstrual periods start back after chemo are at risk for early (premature) menopause. When a woman stops having periods long before the average age (about 51), it’s considered premature menopause. She becomes infertile because her ovaries stop releasing eggs. Early menopause also means that the ovaries stop making the female hormones estrogen and progesterone.

AHA! Now isn’t that interesting. What “young women” is classified as, I don’t know. I was 34 when I went through cancer treatment, and although I “only” did 2 weeks of chemotherapy, at which point I decided to stop that portion of treatment, I still did partial chemo. I still had Temozolomide  in my body on a daily basis for 2 weeks and I also had it in my body while not being compatible to it. I don’t know if this is the source of my problems, but I think I may be on to something. I have printed the information out from the American Cancer Society and I am taking it to my GP on the 28^th so we can discuss my current situation and see if we can piece this puzzle together once and for all.

~Tara

 

Mammodamn!

Since Tuesday’s mammogram was my first one I’ve ever had, I was kind of dreading the pain it was going to cause me. Having heard many horror stories about squeezing, pulling, twisting and yanking, it wasn’t like I was expecting the relaxing setting of a mani/pedi spa. Despite having my boobs squished between what literally looked like a big block of glass, I also didn’t find it as much painful as it was uncomfortable. What I did find out very quickly, however, is that you have to be a freaking contortionist to get into the positions they want you to be in so that they can pull, twist and yank you as they need. 

“Tara, push your bottom this way. No that way. No further out….back….further”. My response to my super friendly tit handler? “to make it easier in the future for you, when you have  youngsters like me come in that have never had these done before, just ask them to give you their best porno pose. They’ll give you what you want.” Lol

Anyone in the Niagara Region knows how horrendous the weather was in the morning and so they had some cancellations which allowed me to get my ultrasound earlier, too. I survived both tests and I see my Dr on January 28^th for results. I don't think I'll ever look at a panini press the same again.

~Tara

Is it hot in here, or is it just me?

Well, you guys know me: I’m frank. Pretty much an open book. So here is another very open personal edition of my blog. If bodily functions or female body parts make you squirm, turn back now. If, however, you can be an adult and actually care to read what is below, go for it. 

 I think my meticulous record-keeping skills may have finally paid off, or at least are serving me well.  I’ve been convinced for the past 3  years or so that I’ve been in perimenopause, but my old GP sang the same old song of “you’re too young,” despite me having many physical and psychological signs of such and him not doing any tests to figure it out either way. Because, as he said, “you’re too young.” I found my pocket calendar with dates of my periods back to December 2013, and man were they going wonky even back then. I remember 2013 being the year that I started getting periods every 2 weeks, and when I mentioned it to my Dr, he shrugged it off. Then in the midst of the weird bi-weekly periods I all of a sudden went 60 days with no period, and when I informed him of that he simply said, “Congratulations.” I’m not pregnant, you moron. 

 

The point is, for almost 3 years now I’ve documented periods that have been going completely out of whack. I went from having the “perfect period pattern” that was predictable every month, I’ve experienced hot flashes and some facial flushing that looked like I had a sunburn. The sweating? Oh. My. God. When we had the polar vortex 2 years ago and it was -40c with windchill I would be sweating with my jacket on. Even now, it’s horrible; I’m constantly sweating in the cold. And the heat, forget it. If it’s -20 I’m sleeping with the window open and a blanket covering my feet, the only part of my body that never fails to get cold. That is, of course, if I can sleep. The insomnia is incredibly horrible. I’d kill to be able to sleep. I am flipping back and forth all night like a sausage on a hot grill. I'm lucky if I am getting about 5 hours of sleep a night. 6 is luxury anymore, and it certainly isn’t quality sleep. And the dreams/borderline nightmares right now are so incredibly vivid. Sometimes I feel like I can’t wake from them. So much for getting any good sleep when I do get to sleep. 

I am convinced my brain-fog is worse, ask anyone around me. Since my surgery I’ve had trouble “finding words” even when looking right at things, but it’s gotten progressively worse. Here is me looking right at a mug on the counter not being able to think of what it’s called: “can you pass me the…ah…umm..behind you. That sippy thing you drink stuff out of.”  If it gets too pathetic Feral comes to my rescue and fills the words in for me.  And there is of course urinary incontinence. Nothing like a little squirt here or there when you laugh, cough, sneeze, switch positions, or step down. And that’s made incredibly worse when you happen to be bleeding at the time. And then there is always crying at the drop of a hat. I can tear up listening to a song, watching a commercial, etc. It’s not uncommon to see me reading something on my laptop with tears streaming down my face. But, you see, I can’t be experiencing perimenopause. Because I am only turning 36 this year and this sort of thing is not supposed to happen until you are in late 40’s or 50’s.

I get it. I’m not a doctor. But I have a lot of time on my hands, and I want to know what the hell is wrong with me. When it feels like your body is revolting against you, and for the longest time I had a GP that didn’t take my concerns seriously, you start researching. What I’m experiencing sure sounds like what I’ve heard of perimenopause.  And not surprisingly the more I researched it, the more I read that women can  enter the “perimenopause stage” of their lives at any time in their 30’s -50’s. The really cruel part is that this stage of our lives can last anywhere for the better part of 10 years. Seriously. Diagnosing perimenopause via bloodwork really isn’t that reliable, as a woman’s hormone levels fluctuate so much. Even if she isn’t in peri/menopause, her FSH test results will have varied readings depending on what time of the day they are collected. 

In addition to that it is very important to know when the first day of a woman’s last menstrual cycle was when the bloodwork is drawn. Up until my Vitamin C experiment, I was bleeding constantly and so I really didn’t have a start/finish to any cycle. As of writing this blog posting I am currently 32 days straight of no bleeding. We’ll see how long this lasts. Below are 35 symptoms of perimenopause. 

35 Symptoms of Perimenopause

• Hot flashes, hot flushes, night sweats and/or cold flashes, clammy feeling
• Irregular heart beat
• Irritability
• Mood swings, sudden tears
• Trouble sleeping through the night (with or without night sweats)
• Irregular periods; shorter, lighter periods; heavier periods, flooding; phantom periods, shorter cycles, longer cycles
• Loss of libido
• Vaginal dryness
• Crashing fatigue
• Anxiety, feeling ill at ease
• Feelings of dread, apprehension, doom
• Difficulty concentrating, disorientation, mental confusion
• Disturbing memory lapses
• Incontinence, especially upon sneezing, laughing; urge incontinence
• Itchy, crawly skin
• Aching, sore joints, muscles and tendons
• Increased tension in muscles
• Breast tenderness
• Headache change: increase or decrease
• Gastrointestinal distress, indigestion, flatulence, gas pain, nausea
• Sudden bouts of bloat
• Depression
• Exacerbation of existing conditions
• Increase in allergies
• Weight gain
• Hair loss or thinning, head, pubic, or whole body; increase in facial hair
• Dizziness, vertigo, light-headedness, episodes of loss of balance
• Changes in body odor
• Electric shock sensation under the skin and in the head
• Tingling in the extremities
• Gum problems, increased bleeding
• Burning tongue, burning roof of mouth, bad taste in mouth, change in breath odor
• Osteoporosis (after several years)
• Changes in fingernails: softer, crack or break easier 
• Tinnitus: ringing in ears, bells, 'whooshing,' buzzing etc.

 I am currently experiencing 27 of the above symptoms but I’ve been experiencing a few of them since either my brain surgery or cancer treatment, so I don’t know whether experiencing those symptoms now are from past issues or if something else is a contributing factor. Now that I have a new GP I will mention this to him at the end of the month and see if he says I “can’t” be in perimenopause I'm only 35.  Who knows, maybe I can be. 

~Tara