Tag Archive | warrior

Grieving the Old Me with Stage IV Cancer

Sep1

Grief with stage IV cancer isn’t just about death—it’s about losing pieces of yourself while you’re still here.

I grieve the life I had. The ability to plan a day and actually do it. The energy to say yes without wondering if I’ll be too fatigued, in pain, or stuck at another surprise blood draw. I watch people go on with their lives and sometimes wish I could just jump in without a second thought.

Instead, trips are shorter, closer, slower. They’re built with rest breaks and backup plans. My daily schedule has shifted from “here’s my whole day” to “here’s what I might try this week.” And when I don’t get it all done, it feels like failure—like I wasn’t enough.

The truth is, cancer has taught me a brutal lesson: energy isn’t just physical. Emotional energy drains faster than running a marathon. My body is fighting behind the scenes 24/7. And my brain? Let’s just say it’s its own exhausting full-time job.

So now I live in a rhythm: do a thing, rest, recharge, repeat. High-energy, pre-cancer me would’ve laughed at the idea of needing recovery time after folding laundry. Yet here I am, with a bullet journal (yes, I caved) trying to map out energy like its currency. I may not be able to control my body but I can take charge of how I respond to it.

This grief isn’t the same as mourning a death, but it is mourning—the loss of my old self, of the version of me who didn’t have to measure every ounce of energy just to exist. And yeah, it sucks.

But I’m still here. I’m still me—just reshaped. Different. Learning to live in this “new normal.” (ugh! I hate that term…must find something else like ‘The Realness Era’ or ‘Life 2.0 – with glitches’) And maybe the most defiant thing I can do is name the grief, feel it, and still keep moving forward, just a little slower and without a plan.

And this my friends is what it is to be resilient. One of the most important lessons to learn from your time on this rock.

When the Hand-Holding Stops: Stage IV and the Vanishing Act of Cancer Care

Aug13

When you’re first diagnosed with cancer, the world seems to spring into motion.

Suddenly, you have a nurse navigator. Appointments are made for you. Your phone rings with check-ins. Social workers appear with clipboards full of resources. The medical team seems to hold your hand every step of the way, from scheduling to scans, with a tone of urgency and compassion that makes you feel like the center of the universe — because you are. You have cancer. And everyone is ready to fight.

But if you live long enough to make it to Stage IV?

The hand-holding stops.

And it’s honestly kind of shocking.

Stage IV: Still Cancer, Somehow Treated Like Less

Let me be clear: Stage IV cancer is not an upgrade. It’s not a different game. It’s the same disease, just farther along. It comes with more complexity, more side effects, more emotions, more coordination — not less.

And yet, once you hit that label — metastatic, incurable, palliative — you become invisible to the very system that once felt like a lifeline.

No more navigator.

No more automatic scheduling. (Except with the Medical Oncologist, they are good about making sure you have your next appointment before you leave)

No more urgency.

No more empathy on tap.

Instead, you’re expected to be a pro at this.

You’ve had cancer before, right? You know how this goes.

So figure it out. Make your own appointments. Call back if you don’t hear anything. Coordinate between specialists. Wait in silence while doctors go on vacation.

And while you’re at it, try not to panic about the words “the lesions are growing.”

It’s Not Just Poor Communication — It’s Emotional Neglect

The emotional whiplash of going from “you’re in a fight and we’re all in it with you” to “we’ll call you… maybe” is real. And cruel.

At Stage IV, we are living with a terminal illness. That means every delay matters. Every appointment not made is time we don’t get back. Every brush-off or dropped ball adds to our fear and frustration.

We’re not new to cancer, but that doesn’t mean we don’t still need help — if anything, we need more.

The System Isn’t Built for Survivors — and That’s the Problem

The cancer care system is designed to walk people through a beginning-middle-end journey. Get in, get treated, get cured. If that doesn’t happen — if your cancer spreads, comes back, or never goes away — the system just… kind of drops you.

There’s no roadmap. No guidance. No hand to hold.

You’re not “curable,” so you’re not the focus.

But what they forget is: You’re still living. Still feeling. Still here.

And deserving of care that reflects that.

What We Need

We don’t need sympathy. We need structure.

We don’t need platitudes. We need people who call us back.

We don’t need miracle cures sent by well-meaning friends.

We need systems that treat us like we matter — even when we can’t be “fixed.”

Stage IV patients deserve the same dignity, coordination, and compassion as anyone newly diagnosed. Maybe more.

Because we’re not just “managing cancer.”

We’re managing life, death, emotions, relationships, fatigue, insurance, fear — and still trying to be human through all of it.

If you’re in the Stage IV club — and I’m so sorry if you are — just know:

You’re not wrong for feeling abandoned.

You’re not crazy for needing more help.

And you’re not alone.

We may have to fight harder to be heard. But our voices matter.

Especially now.

Preparing for The New Normal

Nov3

I’ve spent a lot of today doing research on this new medication I’m going to be starting on Monday. Talking to the Doctors, the Pharmacists, reading medical papers. I started reading people’s experiences, but I don’t know how crazy or truthful these testimonies are…I mean, perception is different for everyone.  Everyone’s situation is different, and everyone reacts differently to things, so it really isn’t helping me. Whatever side effects I get, I will just have to deal with them. I had a total mental breakdown today after talking to the pharmacist….she’s a cancer survivor and she doesn’t candy coat things.  Which is good.

failing

I’m meeting with the nutritionist tomorrow after my radiation treatment. Going to figure out the eating portion of my new normal. See what I’m going to avoid and eat more of. That should be interesting.  Then I have to set up an appointment with the trainer at the gym to see what the best plan of attack is on that end.  It’s going to be quite the challenge because I’m fighting against a lot of things. I have to strengthen my bones since I have osteopenia.  I have joint and muscle pain from the Lupron already, and it may get worse when I start the Aromasin.  There are also the energy levels, and trying to keep my metabolism up.  So I am really going to have to force myself.  I have been doing that already through radiation fatigue.  I like to think I’m a little ahead of the game on that front.

One of the things I’m trying desperately to do is focus on myself. I’ve deleted my Facebook account at this point to make sure I don’t go on to peek. I know there is nothing going on there that could possibly contribute to my happiness or well-being.  Although there are a few people who I really do enjoy their posts…I’ve got some characters as friends.  But I’m trying to stay off my phone and all social media. This is the only social media I’m allowed on right now. I figure once I get myself set and I feel mentally and physically strong, and get into a good solid routine, I will go back on.

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So my big challenges to keep healthy and going are going to be diet, exercise, and sleep. Gee, that’s totally different than what I’ve been trying to work on for the last 20 years of my life.  Stakes are a little higher, and it’s kind of not an option now.  Before, I had the option of eating healthy and exercising, and not getting all stressed.  Now…not so much.

But I have wanted to change my life and get healthy…obviously, it took this whole ordeal to get me to actually do it. So much drama!!!  (In retrospect, I should have asked for something a little less invasive)

Because I’m Fabulous!

Nov2

I met with my Medical Oncologist today.  I’m going to start on Aromasin (Exemestane) on Monday.  I take the Lupron shots every 6 months. This shot shuts my ovaries down so I don’t produce any estrogen. The adrenal glands still produce hormones so the Aromasin will stop this production of estrogen. This should ensure that this cancer that is estrogen driven can’t redevelop or do anything. I will be on these two medications for the next 10 years.  So the Lupron forces me into menopause.  Because there is no test to see when exactly my body will go into menopause for real, they are doing 10 years….by that time my body should have hit the natural menopause state. Interesting stuff right?  Now the Aromasin is a bit on the harsh side. Most people get put on Tamoxifen which has fewer side effects but isn’t as effective for my type of cancer. But if I can’t tolerate the Aromasin I’ll get switched over to the Tamoxifen.  If I can tolerate the Aromasin I may end up getting my ovaries removed so I don’t have to do the Lupron shot anymore. That would be one less medication to take. We’ll see how it goes. (just like Christmas…going to be quite the surprise!)

We are also stopping my Ativan (Lorazepam) for insomnia since it has seemed to stop working. We are going to change it up and going to Desyrel (Trazodone) we’ll see how that works out for me.  It’s supposed to not only help me sleep at night but help with any mood swings due to all the lack of hormones in my body. We’ll see how that works out. YAY Drugs!

At this appointment, my oncologist tells me now that I’m pretty much done with treatment that not everyone who goes through the rigorous aggressive course of treatfabment I took makes it.  I honestly didn’t know how to take that?  I mean that’s kinda scary. I have to think she meant that they had to break the treatment up some or change chemo drugs. Go me. Wow. Oh. I honestly have no idea how to react to that.  Just glad I didn’t know the odds before hand.
She checked out the lumps that have been bugging me the last few weeks.  I developed some bb sized lumps in my chest so when I found them a few weeks back my heart just sunk. She said they were probably nothing but we would keep an eye on them. The odds of any cancer developing at this point is about impossible.  But again, we would check them to see if they have changed in 6 weeks when I go back.

After this appointment, I went to Support Group.  Lately, I can only stay for the first 1/2 hour since I have to go to radiation.  Well, there is a new member. She had been diagnosed with stage 1 breast cancer 12 years ago. She had a lumpectomy and was good.  A few months ago it came back as metastatic breast cancer – Stage IV. My heart just hurts for her. She was so strong to come to support group and to announce that you have Stage IV cancer has to be just one of the hardest things in the world to do. I just wanted to hug her. While not curable, it is treatable. She’ll go on an oral chemo to keep it under control…..And I was just sitting there freaking out that this new medication said that I could lose my hair.  So I’m no longer freaking out about the possibility of losing my hair again or have it thin. This is why they make wigs.  So be it if it happens. Again something brought me down to the reality of the whole situation and to just be thankful to be alive. I also thought: I’m sure glad I made the decision to have a double mastectomy vs. just the single.  I mean they said that the odds of it coming back in another breast were slim to none. I was like yeah, it was a slim to none chance I got it in the first place so….I’d rather go through this once then have to go through it twice. But hey..there is no guarantee something else won’t develop down the line.  So I think I’ll just enjoy the time I have here and deal with whatever comes when it does.

Then I went to radiation. #30 #2 of the booster. 3 more left.  I’ve resorted to gang signs in the count-down.  But the chest is looking pretty bad ass at this point.  It’s getting quite impressive. Met with the Radiology Oncologist.  I told her about the bb sized lumps and she checked them out and said it was just scar tissue and effects to the tissue from radiation. Nothing to worry about. But again she said that we would keep an eye on it over time when we did CT scans.  Because you know I get to do those every 6 months now. So if anything develops from here on out we will catch it pretty quick. But she wants to see me again on Friday to check the status of my skin to see if we will do the last radiation treatment on Monday or just end it on Friday.  They are pretty impressed that I haven’t had to take a break with radiation. Most people have to take a few weeks off about half way through. It’s because I’m just that fucking amazing….really.

Now I’m not usually the type of person that boasts about myself…I’m actually very modest….even though I joke a lot about the whole Fabulous thing. But you know I think for this I’m going to make an exception.  Don’t worry…I won’t let it get to my head and I’ll only do it for a few days. :)

Oh. The downside of all this anti-hormone nonsense….my drinking days are pretty much over. I suppose it’s okay. I had a good run. And any more when I have wine or beer I feel like crap after just 1…so be it.

 

The Hair – The Journey.

Nov1

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First day of Chemo 2/23/16

3-5-16

Just got port in few days prior to this 3/5/16.

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Hair starting to thin 3/7/16.  Best to keep it braided…it was a HOT MESS! Literally one day it just started coming out in lumps

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Hair really thinning 3/15/16. This was obviously NOT a good day.  Chemo was starting to get pretty rough at this point. And let me point out my head hurt from my hair coming out.

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Got it shaved 3/30/16. Fuck that noise! Taking control of the situation.

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Then it just fell out all over the place.. At least it was little hairs…..Just about gone 4/30/16.  During this time there are no face shots of me bald because we had also just bought a house, moved and something had to give…so this is as good as that got.

 

5-30-16

5/30/16 next to the last day of Chemo – Losing eyebrows and eyelashes. The last few months were pretty rough. I should have taken a picture of my hands.  They were brown and peeling…it was crazy.

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6/30/16 a few days after surgery. I felt like one of those hairless cats….Looked like one too!!!! A month after chemo stopped and not a strand of hair on my body. These were probably some of the darkest days. 1 month post chemo

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7/30/16 starting to come back. These were my weekly visits to the surgeon days. 2 months post chemo

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8/30/16 Actual Hair coming in…feeling pretty bad ass about it. 3 months post chemo

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9/30/16 Finally stopped wearing the scarf on my head. 4 months post chemo

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10/27/16 Almost done with Radiation. Hair at strange awkward stage. 5 months post chemo

 

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11/7/16 Last day of Radiation. Last day of Treatment

 

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11/30/2016 6 months post Chemo. (Wednesdays we wear pink)

 

1/31/17 – 8 months since Chemo. Finally got it colored today! No cut though….

 2/28/17.  9 months since Chemo. Hair looks darker than it really is here. Bad lighting!

 

 3/30/17 10 months since Chemo.  And 1 year since I got my head shaved! Still haven’t gotten it trimmed or anything…just colored. I am wearing a headband so it’s pulled back. But kinda feeling like a hippie.

4/30/17 11 months since chemo. I can almost braid parts of it. It’s out of control and crazy. I have not gotten anything trimmed or cut yet. Still not sure I’ll ever cut it again. The thickness is a little less than it was before but not real noticeable. It’s getting better. Still really curly. I actually blow it out to straighten it. I’ll have to get a “natural” picture. But nice to not have to really use a curling iron yet.

The Home Stretch

Oct30

stretch

Tomorrow is the last full dose of radiation treatment. It’s the last one to my lymph nodes. The remaining 5 are boosts to the tumor site. I’ve been very emotional the last week over all this. I mean I’m ecstatic that I’m down to the end. I’m excited about rebuilding myself both physically and mentally. But at the same time, I’m scared to death of what comes next. The possibility of it all coming back. The being alone again. All the cheerleaders have stopped. All the support ceases. You have beat cancer and now you must pick up all your pieces and start over and figure out what to do with them all.

People have been very interesting through this journey. From the people who dissapear because they don’t know what to say, to the people who you are just like…shut up while you can still save yourself. I get it, unless you have been through it it’s a crap shoot. Unless you really know the person you really don’t know what to say.  I have one relative who from day one has been there. He was at a lost at first and we talked about it. But he knows me so he knew what he could and shouldn’t say. He knew for the most part to just talk to me like a person and update me on what is going on. Talk about the same things we have always talked about. He’s one of the only people who realized I was still me.  And he would ask me questions about the cancer. He wanted to understand and know everything. Now I had a few close friends who have been the same way, and I appreciate these people more than they will ever know.

Now I have had conversations with people who just don’t get it. They don’t know the facts, they don’t want to know the facts, they have no concept of this journey, and they don’t want to know about it. They assume they know. Knowing someone who has had cancer or having a relative or friend who is in the industry in some way shape or form does not make you the expert on it.  I mean my husband is a pathology supervisor. He diagnosis all the lumps and bumps for a living. I don’t claim to know what he knows.  And he never having cancer doesn’t claim to know what I know. On the good side we have helped eachother understand from eachother’s point of view.  So that has been good.  But I digress.  If you have never actually been thorugh it, choose your advice and thoughts and knowledge of the subject with caution. But like they say…opinions are like assholes…everyone has one.

My issue is that when someone says something that is untrue (or talking out of their ass) it stays with me. It eats at me. I dwell on it. My mind won’t rest for days because of it. So what I need to do is stop listening to people who have their opinion.  I mean it’s great that they have one, but doesn’t mean it’s correct. I need to just nod and take it with a grain of salt and then just let it go.  Thats the part I have a hard time with. Letting things go from my mind.  THIS will be the hardest part of the Project me phase.  How to not let people get in your head.  This has always been an issue with me so I suppose it’s another reason I’m down this path….I’m my own worst enemy.

So outside of that the radiation site is probably a 2nd degree burn at this point.  They had mentioned taking a break at one point, but since I was so close to being done we are just going to go ahead and move forward. I have some creams to put on to help.  But besides the skin burning I have a pain inside which I’m sure is more things waking up and going “oh shit.” We have put physical thereapy on hold until my skin heals up. I go back on the 17th of November. Just one last check up and go over exercises that I’m going to continue on without them and then they will discharge me  there.

epicFatigue has been up and down. For the most part I’m able to get in 3-4 days at the gym.  So I do my cardio for 35 minutes then some core strenthening and then stretching. Once I’m done with radiation and my energy comes up a bit I’m going to start yoga a few times a week.  Once I get the core stronger and my full range of motion back then I’ll add weights.  All this working out though radiation is just to keep my energy up so I can make it through. I’m not trying to get buff or anything at this point.  This whole process is just going to be baby steps.  Slow and steady.  And just stay on my own mat.

I’ll say it again I’m sure but, a huge shout out to my rock in life and the one who has been there with me and has gotten me through the darkest of days, my husband.  And to my cousin who is more like a brother to me who has been there with me, who needed to learn as much as he could, to keep me laughing and take my mind off of things when I needed it most. To my Aunt and Uncle who came to see me. Two of my oldest friends who are my sounding boards that listen to my rants about anything and everything. And all my other friends and family who have supported me to keep my spirits up through all this craziness.  (Coloring books, oragami,  water bottles, blankets, tote bags,TastyKakes, scarves, hats, cards, inspirational books, fuzzy pajamas, and other goodes) I love you all. Thank you all from the bottom of my heart….I couldn’t have done it all without you.

 

Transition

Oct5

Still going through good days and bad days.  They are a little different than before. Prior treatment was more physical bad days.  Now I’m going through more mental bad days. (Physically I’m exhausted and adjusting to a lot of things that have changed.) It’s more of a “what happens next?” panic.  This usually happens after I am feeling kind of normal and do something I used to do and then have some sort of physical side effect from it. This quickly brings me back to the reality that I’m not all better yet.  I had a discussion withp-3 one of the Radiology Oncologists today about that specific thing.  He told me that it will be a year before I start to feel somewhat normal. So in the meantime remember that I’m still going through treatment and still need to be kind to myself.

Now me being the type of person who needs a timeline, I’m realizing that with this I can’t. But I have to always have a plan.  So, what does someone who needs to always have a plan do in a situation where you have no control over what is going on physically with them? Well…I guess first I’m going to have to be kind to myself for a bit.  I will continue to eat right. I will exercise as many days of the week I can tolerate.  I will not beat myself up if I miss a day or two of exercise or eat something I’m not supposed to.  I know that once I am finished with treatment, I will be able to really focus on rebuilding. And I know even then I need to not be too hard on myself. Right no,w I just feel like I’m in this weird transition. Part of me is so over this and ready to move on. The other part is still in “cancer mode.” But I know that  I will get back into shape. I will get back to my new normal.

Rebuilding!!

Sep28

Went to the gym today. (I know 3 posts in one day…I just thought they should be all different posts rather than one big long one….the average human doesn’t have the attention span to read more than half a page).  I usually get on the treadmill and walk. Yawn. Then I go stretch. Then I go home.  Today I was prepared to do the same thing.  I walked into the locker room to put my stuff in there and look up and this little kid is looking at me confused. Then asks his mom if I was a girl or a boy. The mother reassured him that only girls were allowed in this locker room. So. Yeah. My first reaction was to be very upset and want to cry and leave. Then I’m like…it’s a kid. You see a person with short hair and no boobs it’s kind of a fair question. So as I’m convincing myself to not take it personally and get very self conscience about my appearance (I mean I have just gotten the courage to go without the scarf on my head!)  I get upstairs and look at the treadmill, then look at the elliptical machine. The old me used to do the elliptical and a beastly pace. Well today I decided to see how I would fare on that elliptical Machine. I started out slow. Used the one with the arm poles.  I never used to use those, but I do them on the bike in therapy so why not. It was feeling pretty good at a slow pace. Started getting into the rhythm of the music and then after 5 minutes stepped it up. Still felt good.  So I would do slow and then every 5 minutes do faster for a minute. It felt good to get my heart rate up and start to sweat a little bit.  I thought LEVEL UP! So I’m feeling good enough to up the workout. So I do my 30 minutes on there and I’m leaving and then there is THE MACHINE. It’s a beast. I’m like let me just get on real quick to see what it feels like.  Well I have a goal.

This bugger takes some coordination and is no joke! So I will do 30 minutes on this in the next few weeks!!!

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Radiation Explained.

Sep28

I was going to start out with “I had radiation today” but then was like…duh, you have radiation every day!  I was thinking about how they do it and started to freak out about frying my lungs and heart and stuff.  Now I know they went over everything with me but they didn’t have pictures.  So I went in today with all my questions.  When you walk through to the treatment room you pass this console and it has your pictures on it.  So I stopped and looked at the CT scan of my chest.  There are all sorts of lines and things written all over it.  So I finally asked them to explain how this works for real.  So When they draw the lines on me it marks the area they are administering radiation…the line divides treatment into it two separate parts.  I was thinking they were doing the whole area to the right of my dots over my chest in the back too.  So the first zap is to the back under the arm to get to the backside of the lymph nodes. The second zap is to the front of the same spot to get the front of the lymph nodes.  The third zap they change the machine and put a pad on my chest and move the machine in closer. This zap is the one that gets where the tumor was. It doesn’t go as deep but it concentrates with the help of the padding.  So it doesn’t go deep enough to hit my lungs or heart. If it does it’s very minimal.

So here’s my awesome drawing to explain what they are doing for radiation. (I’m making a fist with my right hand there so back up off my hands!)

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Hooray for Boobies (part 2)

Sep28

The last time I had this title I was announcing that my breasts were trying to kill me and I had Breast Cancer. Today, I’m celebrating the new ones I have. (and am getting)  So I”m not just settling for one size any more!  I want it all!!!!!  I’ve pretty much come to the conclusion that I’m not going to have reconstructive surgery. I mean I don’t want to go under the knife again if I don’t HAVE to, and I hear the procedure is pretty painful.  Considering I have a section where the tumor was very close to the wall the skin lays right on the bone, so it’s kinda thin and well kinda weird.  I don’t know how well that would work and I’m not about to risk unnecessary complications. Besides no one is ever putting drain tubes in my chest again!!  And ya’ll with your own breasts can’t just take them off at the end of the day when you get tired of them.  AND You can’t change the size of them depending on your mood.  So….

Yesterday I went in to get fitted for my prosthesis.  To be honest I had no idea what to expect at all. I’ve never been in for an actual bra fitting before so I really didn’t know how that worked either.  I mean when you go bra shopping you pick what you think looks right put it on determined to fit within certain numbers and be comfortable and look decent under clothes. So the first part of the fitting is determining what size breast you want.  They measure you for band size first and then take a stab to start with a cup size that sounds good to you. WELL not only did I have no idea that you take your rib measurement and add 5 inches and fit to the last hook on the bra, but as the band number goes up the cup increases.  In addition to this every bra manufacturer has different parameters. Ladies this is why we have such a hard time with this task…nothing is standard. And when you find a bra you love and know that it will be discontinued after a year or so, you start the pain all over again.

The other thing I found out is that different countries have different parameters as well. European bras cup sizes and band sizes are a little different.  The company that I am getting my bras and prosthesis thorough is a German company.  So I said lets start with a C cup because that’s what I was most comfortable with most of my life. (before I gained weight and hormones took over my breast size).  I put on a C and I was like “The Germans like a woman with a nice ample breast don’t they!?!”  I would put a German C cup at an American DD.  Because those puppies were the size I had when they were removed!  And no thank you…don’t want to do that.  So after a lot of feeling myself up and having some strange woman feel me up for an hour I finally decided on a nice set.

For more on bra sizing and countries here’s an interesting link:  Bra Size Comparisons.

They didn’t have an extra set of the size I got (7 for the curious mind which is about an American C). I had to leave with a little smaller size (6) which is fine…for the days I want to be a little more demure. But they are a silicone base and feel just like a real one.  I’m sure I”ll name them once they come in.  Now for those of you uber curious types here are pictures!  Yay! pictures of boobies!  There are 2 different kind the same size…hey these were free what do you want!  I’ll take pictures of my “real” fake ones when they come in.

So as you can see they come in a nice little case. And they have a nice little formed bed to rest in. And they are squishy.