This week has already been an eventful one. I sent my oldest off on an amazing adventure (for the record I already miss her like crazy). She is gone to do summer school in Ireland - we figured if she was choosing to reach ahead and get her Grade 12 English credit, she might as well do it in Ireland :-)
Sending her through security at the airport was hard, but at her request I did not cry. I watched her walk through with confidence and chatting with the friends she had just met, and all I felt was pride. Man this girl has come far...from the kid who I worried about constantly to this young woman who is tackling everything she has to head on. I can't wait to hear all her stories when she is back in August!
Now for the part that I'm starting to freak out about - surgery is Thursday. It has really been surreal up until now. I never really processed that they were going to open my skull and remove something from my brain. Even saying "brain surgery" was something I could not do with ease.
People have been asking me how I am doing. I have been answering them honestly with "I'm fine; it will all be ok" - I really am fine. I have felt calm about it all, and trust that the docs know what they are doing. But this morning it really hit me. It is taking everything in me to keep the panic at bay - lots of deep breaths and "you got this" mutterings in my head. I am staying in control cause, to be honest, I'm afraid that once I really start to process it I will get completely overwhelmed.
I do believe that everything will be fine - I'm in the best hands I can be in. I've been told what the recovery is like, and it doesn't sound too bad. And I'm keeping a positive attitude because I believe that it helps. And I have LOTS of support around me. So really I am fine - but truth be told I am scared shitless about tomorrow. Today is the first day the emotion of it all is sitting right under the surface - and I'm not sure I can keep it in check the whole day. I am sure tonight will be a sleepless one, and I will likely lose it at some point. If you happen to witness me starting to lose it, just give me a hug. Or even better do something to make me laugh. Or just stand beside me and know that I really am ok. Gonna take more than this to knock me down!!
Will be pretty silent for awhile...talk to you all soon!
Julie
Wednesday, July 10, 2019
Tuesday, June 25, 2019
It's a date!
Well...I wish I was referring to a date where we were going away, or something exciting was going to happen. Not that, but it's an important one nonetheless.
July 11th, 2019
That's the date that the neurosurgeon will remove this stupid thing in my head, and I can (fingers crossed) just get on with life. It seems every time I hope to "move on" something happens that throws me for a loop. So instead of "moving on" from things, I'm going to embrace them and move forward. Well, maybe not embrace them but at least accept them :-)
Doc explained the surgery and the first part of the recovery (looks like I'll be in the hospital for 5-6 nights). Not sure what recovery entails after that, but I assume it's just resting to get my strength back and more trips to the doc to make sure things are healing nicely.
In true Julie fashion, I haven't thought much about the specifics. Every time I start to process the fact that I'm going for brain surgery, I get overwhelmed and shut the thoughts down. Maybe not the healthiest way, but it's how I'm dealing and that's ok. I still haven't really had a meltdown (and haven't shown up on Sonia's porch with Malibu yet) - I do know it's coming. We've been busy so procrastinating has been easy. But it's coming I'm sure. Hopefully it's not in a public place...the cashier at Loblaws may not appreciate a break down in their line up!
In any case, that's all I've got for now. Going to enjoy the next couple of weeks, then will trust the doctors to do their thing. In reality, that's all I can do. Well that and continue to soak in any good vibes I can find.
J
July 11th, 2019
That's the date that the neurosurgeon will remove this stupid thing in my head, and I can (fingers crossed) just get on with life. It seems every time I hope to "move on" something happens that throws me for a loop. So instead of "moving on" from things, I'm going to embrace them and move forward. Well, maybe not embrace them but at least accept them :-)
Doc explained the surgery and the first part of the recovery (looks like I'll be in the hospital for 5-6 nights). Not sure what recovery entails after that, but I assume it's just resting to get my strength back and more trips to the doc to make sure things are healing nicely.
In true Julie fashion, I haven't thought much about the specifics. Every time I start to process the fact that I'm going for brain surgery, I get overwhelmed and shut the thoughts down. Maybe not the healthiest way, but it's how I'm dealing and that's ok. I still haven't really had a meltdown (and haven't shown up on Sonia's porch with Malibu yet) - I do know it's coming. We've been busy so procrastinating has been easy. But it's coming I'm sure. Hopefully it's not in a public place...the cashier at Loblaws may not appreciate a break down in their line up!
In any case, that's all I've got for now. Going to enjoy the next couple of weeks, then will trust the doctors to do their thing. In reality, that's all I can do. Well that and continue to soak in any good vibes I can find.
J
Wednesday, May 8, 2019
Another Bump in the Road
So like many, I often struggle with how much to share on social media. I ask myself often if sharing things is good or bad; am I putting too much out there. Then I remember how writing about things helps me cope with what is going on in life - so I'm not questioning anymore. I'm going to share the good, the bad and the ugly and what will be will be :-)
At my last check in, I talked about dealing (or not dealing) with all the one year markers that had happened. Will admit, still wasn't entirely done coping with all the baggage the cancer journey left in my hands, but I did feel like I was moving forward and getting things somewhat under control.
I did, however, continue to have these nagging symptoms. Dizziness, headaches, blurry vision, memory gaps, balance issues - all things I attributed to the medication that I was on as part of my continuing cancer treatment. I mentioned them to my oncologist and, in his words "I'm sure it is the medication, but let's send you for a MRI just to make sure - but I am sure it is nothing". To say I no longer trust the words "I'm sure it is nothing" is now an understatement. These are the same words my doctor used before my cancer diagnosis. I had convinced myself it was just part of the recovery process, but went for the MRI anyway.
I guess I should know by now that if a specialist calls you at 7 PM on a Tuesday night, it's probably not to tell you everything is good. Another one of those calls to add to "moments you remember". So here is the deal - it appears that the cancer is not back. To say this is a huge relief for me would be an understatement. I am genuinely thrilled that is doesn't seem to have spread - one point in the positive column.
The next part of the call was the kicker. He told me they did find another tumor. I kind of only got snippets of what he said after that - I was standing in the middle of St Laurent shopping centre with my girl and refused to get worked up over it. What I did catch was it is called an meningioma, that 80% of the time they are benign and that a neuro specialist would be in touch. I figured I would have to wait a bit for that call, but I guess once your in the system things move fast. Got a call that Thursday and saw the neurosurgeon the following Wednesday. For that week, I boxed it up and didn't think about it.
Then came Wednesday - off we went to another doctor. Without all the details, essentially if you've got to get a brain tumor, this is the one you want. He does not believe it is cancer, but will not know for sure until he looks at it under a microscope. So that means he has to go into my brain to remove it (because of where it is, he cannot take a wait and see approach). Is it weird that everyone was excited that this "bump in the road" was only brain surgery and not cancer?? Except hubby - he thought we were all crazy for saying it was good news LOL
The kids took it like troopers (as they always do), although I admit they both seem a little more stressed these days. Has meant lots of hugs from us to assure them all is ok. I'll take hugs from my teens anytime I can get them!
As for me, I'm kinda still ignoring it. I still have the symptoms, but I haven't really dealt with the reality yet. I'm sure it will come, especially once I have a surgery date (doc indicated it would be this summer at some point). And I'm really good at procrastinating when I have to deal with the emotional part of all this. I refuse to let the fear of what is coming (known and unknown) take over my daily life. Not gonna lie - I am positive there will be a time where I will yell, cry and I may even throw things. When this happens, I will lean on my family and my circle (heads up to my circle - I may show up on a porch with some Malibu at some point...don't ask questions, just join me :-) ).
To say hubby and I count our blessings with a little more gusto these days is an understatement. We really don't sweat the small stuff (most of the time), and we fill our time with things we enjoy instead of focusing on the "must do" things. It only took us 20 years of marriage, and a few medical issues to realize doing this is what would make us the most happy.
I'm sure there will be another post coming before the next step, but for now I'll just take all the good vibes and positive mojo you all can muster. One day at a time...
J
At my last check in, I talked about dealing (or not dealing) with all the one year markers that had happened. Will admit, still wasn't entirely done coping with all the baggage the cancer journey left in my hands, but I did feel like I was moving forward and getting things somewhat under control.
I did, however, continue to have these nagging symptoms. Dizziness, headaches, blurry vision, memory gaps, balance issues - all things I attributed to the medication that I was on as part of my continuing cancer treatment. I mentioned them to my oncologist and, in his words "I'm sure it is the medication, but let's send you for a MRI just to make sure - but I am sure it is nothing". To say I no longer trust the words "I'm sure it is nothing" is now an understatement. These are the same words my doctor used before my cancer diagnosis. I had convinced myself it was just part of the recovery process, but went for the MRI anyway.
I guess I should know by now that if a specialist calls you at 7 PM on a Tuesday night, it's probably not to tell you everything is good. Another one of those calls to add to "moments you remember". So here is the deal - it appears that the cancer is not back. To say this is a huge relief for me would be an understatement. I am genuinely thrilled that is doesn't seem to have spread - one point in the positive column.
The next part of the call was the kicker. He told me they did find another tumor. I kind of only got snippets of what he said after that - I was standing in the middle of St Laurent shopping centre with my girl and refused to get worked up over it. What I did catch was it is called an meningioma, that 80% of the time they are benign and that a neuro specialist would be in touch. I figured I would have to wait a bit for that call, but I guess once your in the system things move fast. Got a call that Thursday and saw the neurosurgeon the following Wednesday. For that week, I boxed it up and didn't think about it.
Then came Wednesday - off we went to another doctor. Without all the details, essentially if you've got to get a brain tumor, this is the one you want. He does not believe it is cancer, but will not know for sure until he looks at it under a microscope. So that means he has to go into my brain to remove it (because of where it is, he cannot take a wait and see approach). Is it weird that everyone was excited that this "bump in the road" was only brain surgery and not cancer?? Except hubby - he thought we were all crazy for saying it was good news LOL
The kids took it like troopers (as they always do), although I admit they both seem a little more stressed these days. Has meant lots of hugs from us to assure them all is ok. I'll take hugs from my teens anytime I can get them!
As for me, I'm kinda still ignoring it. I still have the symptoms, but I haven't really dealt with the reality yet. I'm sure it will come, especially once I have a surgery date (doc indicated it would be this summer at some point). And I'm really good at procrastinating when I have to deal with the emotional part of all this. I refuse to let the fear of what is coming (known and unknown) take over my daily life. Not gonna lie - I am positive there will be a time where I will yell, cry and I may even throw things. When this happens, I will lean on my family and my circle (heads up to my circle - I may show up on a porch with some Malibu at some point...don't ask questions, just join me :-) ).
To say hubby and I count our blessings with a little more gusto these days is an understatement. We really don't sweat the small stuff (most of the time), and we fill our time with things we enjoy instead of focusing on the "must do" things. It only took us 20 years of marriage, and a few medical issues to realize doing this is what would make us the most happy.
I'm sure there will be another post coming before the next step, but for now I'll just take all the good vibes and positive mojo you all can muster. One day at a time...
J
Thursday, March 21, 2019
After the "one year"...
I didn't realize how long it had been since I sat down to write! I could say it was because I was super busy - but that would be a lie. I could say it was because I was speechless, but those who know me would call me out on that fib too. The real reason?? There have been alot of "one year since..." dates in the last few months and I just truly wanted to ignore them.
One year since diagnosis; one year since surgery; one year since first treatment; one year of trying to figure things out. One year sounds like a long time - but in reality it isn't long at all, especially when dealing with the last piece.
So in a nutshell, I avoided thinking about all the one years. On November 8th (one year since diagnosis) hubby and I treated ourselves to a night away. We ate good food, drank good wine, went to the spa - an excellent way to try and re-image that particular date. All the other one years, I didn't give a fleeting thought. OK that's a lie - I gave them a fleeting thought then promptly stuck them in a box and put them aside. I was trying to forget all about them. NEWSFLASH - it didn't work. Did I really think that I could forget about all the craziness of the last year? Pretend that it hadn't changed me? Since my avoidance strategy wasn't working I had to start confronting it all. Blech!!!
Here is what I learned. It's friggin hard. ALL. OF. IT. Everything about this stupid journey is hard. Mine seems a little easier because of the amazing people that surround me, but don't let the smiles and social media posts fool you. There are still days when it takes all my effort to get up and get dressed. Days when I want to cocoon myself in blankets and Netflix binges, or want to sit in silence because noise is still overwhelming. I really try to limit those days, but they happen. My new life mantra is "you can visit there, but you can't pack up and live there".
One of the things that bothers me the most is the notion of "one year". I keep thinking what the heck is wrong with me? It's been almost a year since my chemo treatments are finished - why am I not bouncing back and just getting on with life? It seems like a long time to be "dealing with it". And every time I set a date for myself of when I will "be better" and it doesn't happen, I feel like a failure. I know...wah wah wah - but this is my blog and I can wallow if I want LOL
So how have I dealt? I've gotten help. I'm talking to people who remind me that "one year" isn't that long when you are dealing with a life changing event. That it's ok to say "I'm not ok" and not give any explanations. That it is acceptable to say "I just can't today" and not feel guilty. And that I need to remember that cancer is something that I am dealing with, but it isn't who I am. Did an interesting exercise the other day. I was asked to list all of my accomplishments and all the places I thought I was failing. Every single thing on both lists was from the past 18 months - I'd forgotten to list all the things I had accomplished before diagnosis. Was a bit of a reality check - I realized I'm letting the stupid disease define me. Not what I want. So am working on a mind shift.
So where am I now? I think I am finally getting the pain under control. Still have days where I feel like my joints are on fire, but they aren't as frequent so I will take the win. Cognitively and mentally is where I still struggle. The fog that I've been experiencing has not gone away, nor has the inability to multi task. I still get very overwhelmed if there are "too many tabs" open in my brain, or if there are too many things going on at once (like I need to walk away overwhelmed). And memory loss - this one is a little scary. Literal black holes in my short term memory. I'm told all of this is normal, and it will get better with time. No one can say how much time, but I'm learning to just leave it fluid - cause it's gonna take the time it takes and I can't change it.
I still haven't figured out this "revised me" thing. I'm not sure who she is yet. I know my priorities have been solidified; I know my tolerance for bullshit is at an all time low; I know I want to revel in things that make me happy; I know I hold everyone I love a whole lot closer; and material things are nice, but are even less important now. I have no idea how all these pieces will fit together to define me moving forward...but I can assure you however she is defined, she will be pretty bad-ass. I am kicking cancer in the teeth after all...that in itself gives me the right to describe myself as bad-ass.
Keep moving forward...
J
One year since diagnosis; one year since surgery; one year since first treatment; one year of trying to figure things out. One year sounds like a long time - but in reality it isn't long at all, especially when dealing with the last piece.
So in a nutshell, I avoided thinking about all the one years. On November 8th (one year since diagnosis) hubby and I treated ourselves to a night away. We ate good food, drank good wine, went to the spa - an excellent way to try and re-image that particular date. All the other one years, I didn't give a fleeting thought. OK that's a lie - I gave them a fleeting thought then promptly stuck them in a box and put them aside. I was trying to forget all about them. NEWSFLASH - it didn't work. Did I really think that I could forget about all the craziness of the last year? Pretend that it hadn't changed me? Since my avoidance strategy wasn't working I had to start confronting it all. Blech!!!
Here is what I learned. It's friggin hard. ALL. OF. IT. Everything about this stupid journey is hard. Mine seems a little easier because of the amazing people that surround me, but don't let the smiles and social media posts fool you. There are still days when it takes all my effort to get up and get dressed. Days when I want to cocoon myself in blankets and Netflix binges, or want to sit in silence because noise is still overwhelming. I really try to limit those days, but they happen. My new life mantra is "you can visit there, but you can't pack up and live there".
One of the things that bothers me the most is the notion of "one year". I keep thinking what the heck is wrong with me? It's been almost a year since my chemo treatments are finished - why am I not bouncing back and just getting on with life? It seems like a long time to be "dealing with it". And every time I set a date for myself of when I will "be better" and it doesn't happen, I feel like a failure. I know...wah wah wah - but this is my blog and I can wallow if I want LOL
So how have I dealt? I've gotten help. I'm talking to people who remind me that "one year" isn't that long when you are dealing with a life changing event. That it's ok to say "I'm not ok" and not give any explanations. That it is acceptable to say "I just can't today" and not feel guilty. And that I need to remember that cancer is something that I am dealing with, but it isn't who I am. Did an interesting exercise the other day. I was asked to list all of my accomplishments and all the places I thought I was failing. Every single thing on both lists was from the past 18 months - I'd forgotten to list all the things I had accomplished before diagnosis. Was a bit of a reality check - I realized I'm letting the stupid disease define me. Not what I want. So am working on a mind shift.
So where am I now? I think I am finally getting the pain under control. Still have days where I feel like my joints are on fire, but they aren't as frequent so I will take the win. Cognitively and mentally is where I still struggle. The fog that I've been experiencing has not gone away, nor has the inability to multi task. I still get very overwhelmed if there are "too many tabs" open in my brain, or if there are too many things going on at once (like I need to walk away overwhelmed). And memory loss - this one is a little scary. Literal black holes in my short term memory. I'm told all of this is normal, and it will get better with time. No one can say how much time, but I'm learning to just leave it fluid - cause it's gonna take the time it takes and I can't change it.
I still haven't figured out this "revised me" thing. I'm not sure who she is yet. I know my priorities have been solidified; I know my tolerance for bullshit is at an all time low; I know I want to revel in things that make me happy; I know I hold everyone I love a whole lot closer; and material things are nice, but are even less important now. I have no idea how all these pieces will fit together to define me moving forward...but I can assure you however she is defined, she will be pretty bad-ass. I am kicking cancer in the teeth after all...that in itself gives me the right to describe myself as bad-ass.
Keep moving forward...
J
Friday, June 22, 2018
Keeping it Real
So it's been a bit since my last post - and it was on purpose. I was determined to keep what I put out there positive and light hearted - hoping that by putting out good vibes they would come back my way. And the last month or so I just couldn't do it. I couldn't muster the energy to be bubbly - so I just avoided writing anything down.
But the more I thought about it, the more I wondered if I shouldn't share this part? Shouldn't that be part of sharing this journey too? So here I sit, and I'm ready to write. But to be clear, I am not looking for sympathy, and I feel like I've turned a corner with this whole mental part. I'm starting to feel like myself again (most days), and am sure that's a light at the end of the tunnel I see. In my husband's wise words, short term pain (in whatever form that comes) is worth it to be around for 50 more years :-)
When I finished chemo, I was excited to have that part done with. My circle surprised me at my last treatment and showed up to celebrate with me. I rang the bell, and walked out of the centre determined that I would not be back. The following weeks were weird. There was the fatigue and pain that came with treatment, but those I expected and could handle. The part that threw me was the emotional part. I was a wreck...I was moody all the time, I got angry or I cried for no reason, I didn't feel excited about anything. And I had moments where I just needed to disengage. I didn't want to talk, I didn't want to be around people. I just wanted to wallow. Soooo not me - and it freaked me out a bit.
And here is where I tell you how lucky I am. I have people around me who recognized it, and who balanced their "get your butt out of bed" messages with their "take one day at a time" mantras. And it worked...slowly the part of my brain that was finally registering what I had been through started to open up. I started to see it was ok to have days where I was scared (and believe me I have them - I'm scared about what's next; I'm scared about the cancer coming back; I'm scared about my girls' future; I'm scared I won't figure out my new normal), but that I needed to actively make sure to have days where I look around and enjoy the moments as they come. I know...such a cliche. But I have come to see how important it is and I am working to put it into practice. Having said that, I've also learned that avoiding the bad days is also not helpful - so I deal with them. Sometimes that means a good cry, other times it means punching a pillow. And sometimes it means just letting people tell me it will be ok - and believing them.
It is a work in progress...and I have no idea how long it will take for me to feel like me again (or what that new me looks like). But I am getting there. As for how I feel, the pain is my joints and bones is still there, most days I feel like I'm 90 years old. Oh and first thing in the morning I'm so stiff that I walk like a penguin - and stairs are not fun. Brain fog is still a real thing, and sensory overload comes at the most inopportune times. But I've done everything I can to prevent this stupid disease from coming back, and this short term crap will be worth it eventually.
On a happy note, had friends over for dinner this weekend. It was the first time in a really long time that I felt like myself. So I'm in pursuit of more of those moments - and I'm trusting that, while I'm not sure what a new normal looks like, I will get there. And I almost forgot!! My hair is growing back! I have enough now that I've ditched the hats (plus it was wayyyy too hot to wear them). So yay for pixie hair :-) One foot in front of the other....
J
But the more I thought about it, the more I wondered if I shouldn't share this part? Shouldn't that be part of sharing this journey too? So here I sit, and I'm ready to write. But to be clear, I am not looking for sympathy, and I feel like I've turned a corner with this whole mental part. I'm starting to feel like myself again (most days), and am sure that's a light at the end of the tunnel I see. In my husband's wise words, short term pain (in whatever form that comes) is worth it to be around for 50 more years :-)
When I finished chemo, I was excited to have that part done with. My circle surprised me at my last treatment and showed up to celebrate with me. I rang the bell, and walked out of the centre determined that I would not be back. The following weeks were weird. There was the fatigue and pain that came with treatment, but those I expected and could handle. The part that threw me was the emotional part. I was a wreck...I was moody all the time, I got angry or I cried for no reason, I didn't feel excited about anything. And I had moments where I just needed to disengage. I didn't want to talk, I didn't want to be around people. I just wanted to wallow. Soooo not me - and it freaked me out a bit.
And here is where I tell you how lucky I am. I have people around me who recognized it, and who balanced their "get your butt out of bed" messages with their "take one day at a time" mantras. And it worked...slowly the part of my brain that was finally registering what I had been through started to open up. I started to see it was ok to have days where I was scared (and believe me I have them - I'm scared about what's next; I'm scared about the cancer coming back; I'm scared about my girls' future; I'm scared I won't figure out my new normal), but that I needed to actively make sure to have days where I look around and enjoy the moments as they come. I know...such a cliche. But I have come to see how important it is and I am working to put it into practice. Having said that, I've also learned that avoiding the bad days is also not helpful - so I deal with them. Sometimes that means a good cry, other times it means punching a pillow. And sometimes it means just letting people tell me it will be ok - and believing them.
It is a work in progress...and I have no idea how long it will take for me to feel like me again (or what that new me looks like). But I am getting there. As for how I feel, the pain is my joints and bones is still there, most days I feel like I'm 90 years old. Oh and first thing in the morning I'm so stiff that I walk like a penguin - and stairs are not fun. Brain fog is still a real thing, and sensory overload comes at the most inopportune times. But I've done everything I can to prevent this stupid disease from coming back, and this short term crap will be worth it eventually.
On a happy note, had friends over for dinner this weekend. It was the first time in a really long time that I felt like myself. So I'm in pursuit of more of those moments - and I'm trusting that, while I'm not sure what a new normal looks like, I will get there. And I almost forgot!! My hair is growing back! I have enough now that I've ditched the hats (plus it was wayyyy too hot to wear them). So yay for pixie hair :-) One foot in front of the other....
J
Monday, April 16, 2018
Next Step almost done!
In my last post, I talked about being almost half done with my chemo treatments. Well here we are a few weeks later, and by this time tomorrow I will be done my last one. If you could see me right now, you would see me jumping up and down, fist pumping - you pick the visual that portrays how happy I am that this part is coming to an end.
The experience over the last few weeks has been intriguing. While I managed to skip the nausea side effect, and my nails have stayed in tact, the rest of it has been daunting. The fatigue that has set in has been like nothing I have ever experienced. I finally understand the expression bone tired - it's crazy how much I can sleep these days! Oh and the brain fog is the weirdest thing I've experienced. I literally walk around in a fog every day - and multi-tasking has become too much for me to handle. I really hope the fog clears when this is all done - I can't imagine life without the ability to multi task!
Let's see...what else? Sensory overload. That's also new to me - my brain actually hurts if there are too many things going on or too many noises all at once. No hair - that one was expected but I'm getting tired of wearing hats. Pretty sure I will never wear another hat again when I don't have to! Oh and my taste buds are off. I hate thinking things will taste like one thing only to have them taste like something else. Like wine. Worst thing ever to take a sip of what you know is a good wine that you love and have it literally taste like vinegar. Eventually my taste buds return to normal, but it's annoying.
So I am happy that this part of treatment is coming to an end and that, hopefully, the side effects will taper off. Not gonna lie though - the next part on my journey to getting well is the one that I've been avoiding. I don't deal well with the emotional/mental part of things (I'm an avoider by nature) - but I'm discovering that this one I can't just compartmentalize and shelve. I'll have to figure out what my new normal is, and how to deal with everything that has happened. Truth be told, I think that freaks me out more than the chemo. But, in the words of a dear friend, if I want to get my mojo back, I'll have to work my way through it - and so I shall :-)
Thanks again to everyone for your support - it means the world to me and my family. Not sure I'd even be ready to deal with the next part without all the good vibes that have been coming my way. Oh, but before I tackle the heavy stuff, I will have a glass of bubbly to celebrate the end of chemo - that is once my taste buds are back to normal. No point in wasting good bubbly!!
The experience over the last few weeks has been intriguing. While I managed to skip the nausea side effect, and my nails have stayed in tact, the rest of it has been daunting. The fatigue that has set in has been like nothing I have ever experienced. I finally understand the expression bone tired - it's crazy how much I can sleep these days! Oh and the brain fog is the weirdest thing I've experienced. I literally walk around in a fog every day - and multi-tasking has become too much for me to handle. I really hope the fog clears when this is all done - I can't imagine life without the ability to multi task!
Let's see...what else? Sensory overload. That's also new to me - my brain actually hurts if there are too many things going on or too many noises all at once. No hair - that one was expected but I'm getting tired of wearing hats. Pretty sure I will never wear another hat again when I don't have to! Oh and my taste buds are off. I hate thinking things will taste like one thing only to have them taste like something else. Like wine. Worst thing ever to take a sip of what you know is a good wine that you love and have it literally taste like vinegar. Eventually my taste buds return to normal, but it's annoying.
So I am happy that this part of treatment is coming to an end and that, hopefully, the side effects will taper off. Not gonna lie though - the next part on my journey to getting well is the one that I've been avoiding. I don't deal well with the emotional/mental part of things (I'm an avoider by nature) - but I'm discovering that this one I can't just compartmentalize and shelve. I'll have to figure out what my new normal is, and how to deal with everything that has happened. Truth be told, I think that freaks me out more than the chemo. But, in the words of a dear friend, if I want to get my mojo back, I'll have to work my way through it - and so I shall :-)
Thanks again to everyone for your support - it means the world to me and my family. Not sure I'd even be ready to deal with the next part without all the good vibes that have been coming my way. Oh, but before I tackle the heavy stuff, I will have a glass of bubbly to celebrate the end of chemo - that is once my taste buds are back to normal. No point in wasting good bubbly!!
Friday, March 2, 2018
Superwoman I am not!
So a few weeks ago I posted about starting my chemotherapy regimen. I am not gonna lie - although I was scared, I was pretty confident that I could get through it. I was raised to face things head on, and haven't met anything yet that stopped me in my tracks...until now.
The morning of the treatment I was pretty freaked out, but hubby extraordinaire kept me laughing and sane. Honestly have no idea what I would do without him!! The treatment itself wasn't that bad. Got hooked up to the machine that would pump crap into me, donned my ice mitts and ice booties (that was actually the worst part - ice on my hands and feet for 90 minutes wasn't fun!), and just sat back for 2.5 hours. I thought "this isn't bad!). We left, went for lunch...just a very normal day!
I actually felt pretty good for the first few days. I have no idea what I was expecting, but I thought the side effects would be immediate; that I would come home and just want to crawl into bed. I was a little more tired, but other than that things were good. Until day 5.
Day 4 I started to feel a little achy (a common side effect). Still no nausea which was a huge bonus for me, but my bones were really sore. I was determined (my husband used words like stubborn and pig headed) to try not to take any medication for the pain. It wasn't bad, and honestly I was nervous about putting more crap into my system. But by Day 5 I would have taken whatever they wanted to give me by IV. It was awful. Like really awful - pelvis, hips, chest bone pain. It was all normal - but how the heck was I supposed to know that at the time?? I gave in and took the pain meds, and it was way more manageable after that. By day 7, I was pain free and, other than being more tired, felt back to myself.
Then came Day 14 - my hair started falling out. I knew it was coming, and I wasn't super worried about it - but it knocked the wind out of me when the first clump came out. Got a cute pixie cut, and will hold onto it until I need to shave it completely. Deep breaths have become my habit these days :-)
Let's be clear...I'm not looking for sympathy. This post was about putting my experience out there and working through things in my own head. I will take one lousy week for 2 weeks of feeling good - I'm lucky in that regard! I have my moments, but truly feel like staying positive through all this is what is helping me cope. I'm sure there are a few more meltdowns coming, but they will be a bump in this journey - they won't define it.
I'm learning to ask for help more (still a work in progress), and I am crawling into bed when I need to. My family and my circle have been more supportive than I could ever have asked for - lucky in that regard too!
So treatment number two is next week - and then I'm half done! I know what to expect now, and I am not going to try to be superwoman. Even superwoman needed help every now and then. My help will come from my hubby, my friends and my pain medication - not necessarily in that order LOL.
Until then, my weekend will be filled with a cheer competition and lots of family time. Exactly how I want to be!
J
The morning of the treatment I was pretty freaked out, but hubby extraordinaire kept me laughing and sane. Honestly have no idea what I would do without him!! The treatment itself wasn't that bad. Got hooked up to the machine that would pump crap into me, donned my ice mitts and ice booties (that was actually the worst part - ice on my hands and feet for 90 minutes wasn't fun!), and just sat back for 2.5 hours. I thought "this isn't bad!). We left, went for lunch...just a very normal day!
I actually felt pretty good for the first few days. I have no idea what I was expecting, but I thought the side effects would be immediate; that I would come home and just want to crawl into bed. I was a little more tired, but other than that things were good. Until day 5.
Day 4 I started to feel a little achy (a common side effect). Still no nausea which was a huge bonus for me, but my bones were really sore. I was determined (my husband used words like stubborn and pig headed) to try not to take any medication for the pain. It wasn't bad, and honestly I was nervous about putting more crap into my system. But by Day 5 I would have taken whatever they wanted to give me by IV. It was awful. Like really awful - pelvis, hips, chest bone pain. It was all normal - but how the heck was I supposed to know that at the time?? I gave in and took the pain meds, and it was way more manageable after that. By day 7, I was pain free and, other than being more tired, felt back to myself.
Then came Day 14 - my hair started falling out. I knew it was coming, and I wasn't super worried about it - but it knocked the wind out of me when the first clump came out. Got a cute pixie cut, and will hold onto it until I need to shave it completely. Deep breaths have become my habit these days :-)
Let's be clear...I'm not looking for sympathy. This post was about putting my experience out there and working through things in my own head. I will take one lousy week for 2 weeks of feeling good - I'm lucky in that regard! I have my moments, but truly feel like staying positive through all this is what is helping me cope. I'm sure there are a few more meltdowns coming, but they will be a bump in this journey - they won't define it.
I'm learning to ask for help more (still a work in progress), and I am crawling into bed when I need to. My family and my circle have been more supportive than I could ever have asked for - lucky in that regard too!
So treatment number two is next week - and then I'm half done! I know what to expect now, and I am not going to try to be superwoman. Even superwoman needed help every now and then. My help will come from my hubby, my friends and my pain medication - not necessarily in that order LOL.
Until then, my weekend will be filled with a cheer competition and lots of family time. Exactly how I want to be!
J
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