Stayin’ Alive

October 29, 2023 JackieP8 Comments

So far, so good at stayin’ alive. I’ve had my good days and of course, my bad days. I’m still here though and that’s what counts I suppose.

It’s been a while since I last posted. That’s because nothing much is happening. I’m healing. Slowly, very slowly but I AM healing. I’ve been on Prednisone for almost six weeks now. The longest time yet and now I’m slowly coming off of them. Nothing is going to happen, chemo-wise, until my legs are healed. So, no doctor’s appointments, nothing for almost six weeks.

It’s been……nice in a way. Relaxing.

I mean, it could be good, it could be bad news for me. I’ll know more after Monday when my next CT scan happens. It will say whether the cancer has spread, retreated a bit, or stayed the same during these times. I’ll let everyone know when I know.

Of course, coming off Prednisone has its downside also. Today I feel like crap. Dizzy, short breathed, “wobbly”. I usually do coming off the pills. Prednisone is great at making me feel good when I’m on it. The downside is it masks a lot of what is really going on until I come off of it. It’s usually not good either. Such is cancer.

During the last six weeks, I felt pretty good. I managed to get some things done around the house. I wanted to get as much done before winter set in as I could, while I could, as I knew once I was off the pills I wouldn’t be able to do a lot of these things. Let me tell you, breathing is so underrated. I like breathing. 😉

Even coming off Prednisone with its drawbacks I still ‘feel’ okay. I mean I don’t feel much different than I did back in March when I was first diagnosed with cancer. I made it six months since the diagnosis! I think I’m doing damn good. Who really knows how much time I actually have left? I don’t know and I doubt the doctors know either. That’s the thing with this type of cancer (Mesothelioma) in women, especially, they just don’t know a lot.

I do know one thing though. I’m going to surprise everyone! I’m going to live longer than they think I will. I got shit to do yet!

I’ve been doing some reflecting lately. On my life. The people that I came across in my life. Some of my life decisions. I have to admit I don’t have many (if any, really) regrets. I made decisions based on what I knew at that time and what I felt was best for me, at that time. So, no regrets in that way. As for people, yeah, some regrets there. Some people just sucked the life out of me and I let them. Some abused me, and some treated me well. I loved the ones who treated me well, who were my friends, or who still are my friends. Who gave me great advice and really wanted what was best for me. Those people are rare and treasured.

As for the abusers, well, they can suck a duck. LOL And yes, that includes relatives.

As for me, I’m going to ……. keep stayin’ alive!!

Updates and Clarity

October 1, 2023 JackieP7 Comments

Photo by Felix Mittermeier on Pexels.com

Hello from the dark side, my friends. September was a hell of a month. It was probably the worst one so far in my cancer journey. I’m sure there will be others down the road but whew! I’m sure glad this one is over with.

Between open sores on both legs and feet, a bout of food poisoning, and overall a feeling of being a big pile of steaming shit it was pure hell. I made it through alive and for that I’m happy. I had a few doubts a couple of times. Like I’ve said before, this dying business is hard work.

I’ve been back to the cancer doctor’s office a couple of times in September for the sores on my legs and feet. They are a wonderful, caring team and I’m sure glad they are on my side. I was put back on prednisone for a month and right away a lot of the pain went away (thank goodness). I still have some nasty-looking open sores that weep but slowly they are healing. Slowly is the operative word here. Between the cancer and the diabetes, I do heal very, very slowly.

They welcome questions and give thorough formed answers. If they don’t know the answer, they tell me and they find the answers the best that they can. They run lots of blood tests. I joke sometimes that the lab at the hospital has more of my blood than I do. Ha!

As they were treating my legs they took a couple of biopsies as the doctor thought something else might be going on with them. I might have a previous unknown autoimmune disorder and/or a blood clotting issue as just from a couple of small biopsies I bleed way too much for their satisfaction. So, back to the lab for more blood tests. They haven’t gotten the complete labs back on the blood clotting yet or the biopsies as according to the doctor, “things were a bit more complicated than expected.” Whatever the hell that means. Eh, I’m a complicated woman it seems.

I would really like to be a little less complicated, please. Thank you. 🙂

As for taking chemo, which it seems is my last resort as I didn’t do well on immunotherapy, I’m still debating on it. I know in my last post I said I wouldn’t take chemo and at the time I meant it. I was also dealing with a whole lot of pain, and very little sleep and made my decision based on that.

At this time, I’m not taking chemo entirely off the table. Yet. Some conditions will have to be met before I do. It’s my decision to take it or not, they can’t make me. Cancer is a nasty, complicated disease. It takes and takes and still wants more. I want to give it my best fight. I really do. I’m not ready to give up. I’m stubborn and I’m mad as hell. I still sometimes question, “Why me?” Then I keep moving forward the best I can.

Chemo scares me. It does. It could go bad easily. Or, it could work for a while. It’s the damn side effects that scare me the most. I’ve heard so many horror stories. So, yeah, I’m scared.

If they will agree to give me the lowest dose possible in the beginning I might agree. The thing is this…..my body does not and never has processed medicines the same as most people. I don’t tolerate the usual ‘adult’ dose. Hell, sometimes I barely tolerate the kid dose. So, if they give me the usual adult dose of chemo drugs I’m truly terrified it will kill me quicker than the cancer will.

Without the chemo, who knows how long I might have left. I don’t think they even know for sure. In fact, I’m sure they don’t know. Mesothelioma is so rare in women that they don’t have enough data to say for sure about anything dealing with a woman with it. In fact, I asked my cancer doctor how many women he treated with this type of cancer in his long career. He said two, maybe three, and none of them did well with immunotherapy. He never said how they did with chemo. Interesting I think. They just don’t know.

In essence, I haven’t given up on chemo completely. I still don’t know. I have another CT scan at the end of October. That will show us if the cancer is spreading, staying steady, or backtracking. I will make up my mind then.

Oh, one more bit of news I wanted to share. I am now a Canadian citizen! (for those that don’t know it already.) I have wanted to become a Canadian citizen for many years, even before my husband died but it just didn’t happen. Now I am one! Yay me!

I have dual citizenship now. USA and Canada. I feel so accomplished! 🙂

Blogging · Cancer

My State of Mind 6 Months After Cancer Diagnosis

September 4, 2023 JackieP8 Comments

Six months ago I heard that dreaded “C” word no one wants to hear, “You have cancer.”

That was quickly followed by even worse words, “It’s terminal. There is no cure for your rare type of cancer.”

Mesothelioma, which is the type of cancer I have, is so rare in women that the latest numbers I could find were from 2019 in the US.

Of the 2,911 mesothelioma cases diagnosed in 2019, men accounted for 2,141 cases and women accounted for 770 cases. That means approximately 74% of mesothelioma cases occurred in men and 26% occurred in women.

The Mesothelioma Center

In Canada from 2018:

The most recent incidence statistics for mesothelioma are from 2018: 410 Canadians were diagnosed with mesothelioma. 315 men were diagnosed with mesothelioma. 95 women were diagnosed with mesothelioma.
Canadian Cancer Society

The cancer doctor gave me six months without treatment and 18 or more months with treatment. Not the best-looking outcome.

To say I was scared, devastated, and numb would be totally accurate. I didn’t know much about mesothelioma so I started educating myself. It didn’t look promising, that’s for sure. In those first few weeks, I cried….. a lot. I asked of the universe, “Why me?” I was at first, scared, then I became very pissed off. I was angry!

The next month or so I wavered between anger and a ‘fuck it’ attitude. Especially when I got so sick from the immunotherapy treatments. There were times I felt so bad just from the treatments I wanted to give up. I’d lay in bed and think, ‘Why don’t I just die now? Take me now if this is how my life is going to be!’

Then my stubbornness would kick in.

So, how’s my mindset now? After six months of living with the cancer? It’s a lot better than it was six months ago. Oh, I’m still pissed. I’m also determined to be one for the medical books (again) and live longer than they think. Eighteen months? Oh hell no! It’s going to be longer than that! I plan on years. It may not happen but I’m going to try my best to make it happen.

Truly, I don’t feel much different, physically, than I did six months ago. I mean, yeah, the treatments so far have been brutal in their side effects but I’ve handled it.

The next phase is chemo since immunotherapy hasn’t been that nice to me. I’m not sure about the doctor’s take on it though. He said he wanted me to do chemo because he didn’t see any change in my cancer. As for me, no change is good news. It hasn’t gotten worse. I’m curious though on how many women he’s treated with mesothelioma? I’m thinking of asking him tomorrow when I see him.

Personally, I think being a woman with this is different than being a man. I mean, with me anyway, I don’t process medications like most people. I always have to take a lesser dose than what would be considered “normal”. My body is weird. I tried explaining that to the doctor but I don’t think he got it. LOL Poor man just looked confused.

Going back to my state of mind today versus six months ago, I think it’s in a much better place. I rarely cry about it anymore. Yeah, I’m still pissed but I think that’s a good thing as it keeps me motivated.

I’ve reached the six-month mark this month with the cancer. I’m ready for the next six months! Bring it on!

On other news front. This is my birthday month! Yea me! I’ll be turning 68 on the 12th. I made it! One more birthday under my belt. If anyone wants to get me something (hahahahaha) I need a new CPAP machine! Mine is ten years old and fading and I need one for sleeping. I can’t sleep without it but crap they are expensive! I can’t afford it. Eh, I’ll manage somehow but I thought I’d throw it out there in the universe.

So, yeah, I made it these first six months. My mind and heart are in a better place than it was in March. I’m much more at peace with myself and the diagnosis.

I’ll keep on living for a while longer, thank you very much……..

Blogging · Cancer

New Cancer Treatment Plan

August 24, 2023 JackieP10 Comments

Well, I went and saw my cancer doctor yesterday afternoon. As expected, he changed my treatment plan, with my approval of course. I will now start chemo.

I saw it coming for a while now. I’m not going to lie, chemo scares the crap out of me. I’ve heard so many horror stories about the side effects. I’m going to try anyway. I’ve already had some bad experiences with side effects so what’s a few more? Wish me luck!

I won’t be starting it for a few weeks yet as I’m still healing from the last immunotherapy side effects. He wants me completely healed up before starting chemo. Makes sense to me! I see him again on September 5th to check me out and tell me when I start the chemo treatments. I’m not exactly looking forward to it but what else can I do?

I’m not ready to give up.

In other health news, I had my procedure Monday to drain the fluid from around my lungs, again. It’s amazing how fast it relieves my breathing when it’s done. They didn’t take a lot, only 300 mm this time but it made a huge difference. Even my blood pressure dropped by 20 points. So, I feel and breathe much easier now. What a relief!

My legs are almost completely healed. There are a few spots that are draining.

I just cover them with gauze and tape and change them out several times a day. No biggie.

I’ve also met and had a meeting with my palliative care team. It’s just the ‘setting up things’ stage for when I need it later down the road. I liked them all so that helps. I also am supposed to have a home care person come over one day. She scheduled with me for last Friday but wasn’t able to make it and I haven’t heard anything from her since. Again, it’s just the beginning stage for when I need help later. Wonder if they do housework? hahahaha……..

I have been super busy, like I said in my last post, this dying business is hard work!

Blogging · Cancer

This Dying Business is Hard Work

August 17, 2023 JackieP17 Comments

I know I’ve been missing in action lately. Sorry about that. My energy level was/is at an all-time low the last few weeks.

I had my last cancer treatment on the 24th of last month and it has been pure hell. I told you in my first post about my cancer journey that I wouldn’t hide the ugly side. So, here is some of it.

About two days after my treatment I got sick. I mean, ER-type sick. First I developed the open sores (again) all over my legs and feet. Then my feet and legs started to swell twice their size. Wow, that hurt! After both legs turned bright red and hurt like hell I decided I better get to the ER. Something was definitely seriously wrong! I could barely walk out to my granddaughter’s car when she came to pick me up.

Pic by Jackie Phillips. This was at the beginning of my infection. It got much worse!

After a four-hour wait, we get to see the ER doctor and I show her my legs and feet. She decided I had cellulitis and prescribed antibiotics. I tried to explain to her that I had cancer and was on immunotherapy and that antibiotics would not work like they should. She, of course, was the doctor and knew better than me the victim…..I mean patient! I went home with the prescription, got it filled, and started taking them. They of course did nothing. But, eh, I tried.

A couple of days later my legs and feet were no better so we decided to go back to the ER (another four-hour wait) and see the doctor. Granted the ER was super busy and they were short-handed so I will give this doctor a bit of grace. He took a 30-second glance at my legs and decided I had MSSA, which is a staph infection. Again, I tried to explain I was on immunotherapy and yet again he didn’t listen. It’s so damn frustrating when the doctors don’t listen! Ugh. With another, different antibiotic in hand, I left and went home. I got it filled and started taking it after stopping the first ones.

It’s a damn good thing I had an appointment with my cancer doctor the following week. They heard my tale of woe, checked me out, said I had an immunotherapy-related skin infection, and put me back on Prednisone to suppress my immune system. Oh lordy, I love those pills! Within a day I was feeling better. Those are some little miracle pills for me!

I’m also having big problems breathing. While I was at my cancer doctor appointment they sent me for an emergency lung x-ray, didn’t like what they saw and sent me for an emergency CT scan. The fluid surrounding my lungs was back in full force. I could hardly walk five steps without gasping for air. It feels like I’m drowning. It’s a terrible and scary feeling not being able to breathe. I’m scheduled to have the fluid drained this coming Monday the 21st. Wish me luck! I should be able to breathe again afterward.

The cancer doctor gave me a prescription in the meantime for a diuretic to help with the fluid but after a couple of days of those I broke out in hives. Man, life has not been kind to me lately! I had to of course stop those. First time in my life I got hives. Geesh.

I have another cancer doctor’s appointment on the 22nd. I think they are going to change my treatment plan as I am not doing good at all on immunotherapy. I think they are going to suggest chemo. I’ll write another blog post and keep you all updated on what happens afterward. In the meantime, I try to keep my thoughts positive and my head high.

Keep all that good mojo headed my way, please!

This dying business is hard work…………

Blogging · Cancer

Cancer Treatments and Side Effects

July 30, 2023 JackieP10 Comments

Ah, welcome to my world of side effects from cancer treatments. Where every day is filled with new adventures on how to hurt. Or where to itch. Or both!

Come one! Come all!

I had my third treatment this past Monday. It was with both medicines this time. That’s how the treatments go. First, both medicines, then next time, one medicine, then again with both, etc. On the serious side, I’m tolerating this treatment ok. Yeah, I’ve got itchy bumps like last time, which like I stated before is irritating but, I can handle it.

What’s new is swollen feet and lower legs. I’m waddling like a duck! By the end of the day, both feet are so swollen and sore that I can barely walk. So, I go to bed. They do go down some during the night but not completely. I’m doing a bit better today, maybe it will sort itself out. I hope so! It’s hard to do anything with swollen feet.

Even though I have some tough side effects, I still have it better than people on chemo. I thank the universe for that. I won’t lose my hair, I don’t get nauseated, I don’t throw up.

When I go to get treatments I sometimes see some of the chemo patients and they look rough. I feel for them, I really do. Chemo is so hard on the body. Granted my treatments are too, not like chemo though. After the last treatments, I kind of know what to expect and I think it makes it easier to handle. At least for me, it does. I’ll try to handle them with few complaints (you’ll notice I said FEW not none. LOL).

Mostly I’m just being honest with you. I have noticed that with a lot of blogs or whatnot about cancer they kind of skim over the side effects. That to me is not helpful for someone going through something similar. They need to know the ugly facts.

Side effects are hard to take! I realize that everyone’s tolerance for them can differ. Some, like myself, have a high threshold for pain. Some don’t. At least everyone will kind of know what to expect if I’m honest about them.

The next piece of news is that I finally spoke to a therapist on Thursday via phone. I opted for the phone instead of in-person because it’s just easier for me. Otherwise, I would have had to make another trip to the hospital to see her as that’s where she is located. Eh, I spend enough time there as it is. So, they offered a phone appointment and I took it.

I guess technically she’s more of a social worker but she does therapy also. I liked her. We talked for an hour. She asked some pointed questions, and I answered as honestly as I could. I think she will help me deal with some issues I’ve been having with my cancer diagnosis and especially with the ‘dying’ part. I joke about dying a lot (just ask my granddaughter) but I’m not as nonchalant as I like to think I am about it.

We will talk about every three weeks, at least that’s what she said. I guess the most important part is I was comfortable talking to her. We’ll see how it goes.

I realized the other day that I’m almost past the initial six months that they gave me to live with my cancer. So, either the treatments are actually working or they really can’t say for a certainty about how long I have. The latter is what I’m leaning towards. There are just so few women who have Mesothelioma and everyone knows women physically are different than men. Our bodies can handle hard things better in my humble opinion. After all, we have babies and periods! Let men try and do that! Sorry, guys but you know it’s true.

So, I’m hoping I make the medical books for living much longer than originally thought, instead of just being ordinarily rare………..

Blogging · Cancer

Bucket List Check-Offs and Add On’s

July 16, 2023 JackieP9 Comments

As some of you know, because I posted on Facebook, I have sent in my Canadian citizenship paperwork! I’m so excited.

I’ve been wanting to do this for a very long time now, even before my husband died. I just couldn’t afford the fees that came with it. It’s not cheap! It was number one on my bucket list and now I can check it off!

Thank you to my step-kids, Jodie and Jeff, and my grandson Chad who came together and put up the money for me. My granddaughter, Morgan saved me when I was fighting with my old printer and got me a new printer so I could print off the paperwork to mail in. So, with this teamwork, I finally managed to get all the paperwork done and mailed off this past week.

Also, because you all know I do have limited time because of my cancer I was able to ask for a special speedy procedure as the wait time for citizenship is now up to 19 months! That is from the official Canadian website. I sent a letter from my doctor stating I have incurable cancer and a letter from me asking for a quicker response time due to my cancer diagnosis.

Now, all I can do is wait. They may or may not grant my request. If not, then I’m determined to outlive the wait time. Well, ok, I’m determined to do this anyway! But, you know what I mean.

Once granted, (being positive here) I will have dual citizenship as I’m not giving up my USA citizenship. I still love my home country.

I also love Canada. I have from the moment I stepped off the plane in Calgary 21 years ago. I have always felt at home here. I’ve felt safe, wanted, and liked.

I do have a second thing on my bucket list but for now, I’m not saying what it is. I need to add others though and I’m just not sure what. My traveling days are pretty much over I feel and I really don’t have that urge anymore. Not like I did when I was younger. I’ve found my spot to put down roots and I just don’t relish moving from here, even for a little while.

I will have to do a lot of thinking. Bucket lists are important things. Especially a ‘before you die’ one. I’ve done a lot in my life, not sure what else I want to do at this point. I’ve written two books, didn’t ever think I would write one much less two! That was always a dream of mine.

Maybe there’s another book in me? Some people have suggested I write a memoir or something similar and I have to admit I do have one started, so maybe? I don’t know.

I’ve also always wanted to win the lottery but eh, don’t see that coming true. First off, I would need to buy the lottery tickets and I haven’t done that in years. Maybe I should start……..

Blogging · Cancer

Cancer Pit Stop

July 9, 2023 JackieP8 Comments

I’ve been on a cancer pit stop for the past month or so. More like an immunotherapy pit stop. That’s when I’m put on the drug Prednisone to put the brakes on my overdriven immune system so I can heal from the side effects.

It has worked wonderfully!

I am 99% healed from those terrible open sores everywhere. I have just a few spots on one wrist and one ankle. Otherwise, I feel really good. The best I’ve felt in years to tell you the truth. Physically I feel great, mentally, has been a bit up and down but I don’t beat myself up on that as well, it’s a lot to carry in my head and emotions.

The doctor and nurses did explain to me from the beginning of my treatments that immunotherapy is like ‘stop and go’. First, I’m given drugs to overstimulate my immune system so my own immune system would attack and kill the cancer cells. Unfortunately, sometimes it works too good and my immune system will attack healthy cells, thus the bad side effects. That’s when the ‘stop’ part comes into play.

I heal from the side effects so I can continue the treatments. Which I will, as my next treatment is on the 24th of July. Yea! It feels like forever. I’m excited to continue the treatments, yet dreading it. This circle will continue until I can no longer do the treatments. When will that be? I have no idea but hopefully, I can keep up with them enough to extend my life for years yet. Keep your fingers crossed friends!

For me, it’s been worth it. I’m still alive and enjoying my life, my family, and my friends.

Are the treatments working, so the side effects are worth the ordeal? I will know soon. I get another CT scan on the 17th of July and that should show if the cancer has stagnated, reversed a bit, or has grown. Keep sending those good prayers, vibes, juju, or whatever!

I know I will never be cured, BUT…..hopefully, I can be given a few more years of quality life. I’ll be happy with that.

Blogging · Cancer

A Sense of Urgency

Featured JackieP12 Comments

Ever since my cancer diagnosis, I’ve had this feeling of a sense of urgency in everything I do. Sometimes it’s a bit irrational. Ok, most times it is, I think. It’s there nonetheless and it doesn’t seem to be fading.

From housework to blogging it’s there in the back of my mind, lurking. Always there. Sometimes strongly, sometimes just in the background, but always, always there.

Maybe it’s because I know I have a limited time left. I’m sure that must be it. I don’t think I’ve got as limited a time as my mind would suggest. I truly believe in my heart that I’m going to be THAT woman, that woman that has more time than the doctors think. That woman that defies the odds. That woman who makes the doctors smile.

Yet, that sense of urgency is still there in everything I do, in everything I want to do. I can’t shake it no matter what I tell myself or believe.

I feel like I need to get everything done NOW. As soon as possible! I mean, logically, I can’t. I know that and yet it remains how I feel. I have to clean this room, NOW. I have to read this story, NOW, I have to write this blog, NOW.

There are more pleasant things I want to do. Like paint. I have everything set up, my easel, my canvas, my paints. I even know what I want to paint and yes, that feeling of urgency is there too. Yet, I can’t seem to do it! It sits in this room and stares at me, saying, no….yelling……HAVE FUN TOO! PAINT ME!!!

I can’t seem to do it though. Why?

It’s like this is the most serious time of my life…..the end of my life. So, why can’t I do things I really enjoy? Why do I hesitate and just concentrate on mundane things like cleaning or laundry or sweeping? It’s a bit of a soul crusher. Really. Yet, I feel so much urgency in doing the painting. It’s crazy. Maybe I’ve gone a bit crazy?

Maybe I really do need to talk to a therapist. Am I even making sense right now? I feel like I’m not. It’s ok though as my life hasn’t made much sense for a while now. Not since March when I was told of my cancer.

Today is one of those days……..

When things have such a sense of urgency about them……..

Blogging · Cancer

Friendships, Family, and Surreality

Featured JackieP5 Comments

I’ve lived in a surreal world since my terminal cancer diagnosis. Maybe it’s the brain fog that comes with most chronic illnesses. Perhaps it’s the word, ‘terminal’ that came with it. I’m not sure.

All I know is it feels so surreal every day since. I live, yet I die a little every day. I do my day-to-day things as usual, well as normally as I can. I live by a schedule. It’s my sanity some days. That schedule is what I hold onto when things get a bit tough. It’s my normality…..my schedule…..my doing everyday things that sometimes gets me through the bad days.

I feel that if I can stick to my schedule then I’m still alive, I’m living, I’m LIVING NORMALLY.

Yet, it’s all so surreal.

Nothing will be ‘normal’ again. Nothing. Certainly not living. Every day that I’m still alive and breathing I’m winning. I’m beating the cancer, I’m beating the odds.

I have some pretty awesome friends. Most live on the other side of my computer but it doesn’t make them any less of great friends. They cheer me up and cheer me on. They email me and write me personal notes via real mail and we talk on messenger or by phone. I’m so grateful for them. They all have lives, busy and bustling yet they take time to care about me and see how I’m coping. I love my friends. I wish every one of them lived closer. Unfortunately, they don’t but we make do. I appreciate their love and concern. Their prayers, healing vibes, thoughts, juju, whatever positive they send me, I suck that shit up. Thank you, my friends. I love you all.

As for my family. I have another great support system. It’s from my family that I choose. My granddaughter, her mother, my stepkids, and my grandson. They are all from my late husband’s side of the family. Now, my family and I love them dearly. I don’t think I would have made it this far without them, especially my granddaughter and her mom. They are my rocks. They have been with me from the beginning and they will be with me until the end.

As for my biological family, my so-called “blood” family they don’t know about my cancer. I haven’t told them nor do I intend to. We aren’t close at all. In fact, I don’t even know if they are still alive either. I have three siblings. Two older and one younger, all in bad health. So, who knows. I haven’t heard from them at all since my husband died four years ago. Then it was just my older sister. She emailed me after I emailed her about my husband passing. She sent me two sentences. Nothing since.

I’ve given up on them. I’m the black sheep of the family. Which to me is so hilarious. I will let them know I’ve passed and why when it happens. I plan on writing a letter and having my granddaughter mail it after I die. I know some of you will say this is the time of forgiveness and letting things go. They are family.

Bullocks. They aren’t family in the true sense of the word. They’ve hurt me numerous times. They’ve lied about me, they’ve slandered me. I don’t forget. I don’t forgive. Some things are unforgivable in my eyes and heart.

Maybe it’s wrong of me. Maybe I’ll change my mind once my inevitable demise gets closer. Maybe. I doubt it. I’ll decide when that time comes. Until then. No. I won’t tell them. Am I wrong? I don’t know.

Surreality is settling in once again. It’s a bit strange and bemusing when it happens. When I think about actually dying. Almost knowing when. Certainly knowing how. Strange……..

Blogging · Cancer

Getting My Affairs in Order

Featured JackieP13 Comments

I was never told directly to, “get my affairs in order”. I knew that’s what I had to do when I was diagnosed with terminal cancer. I mean, it just makes sense, doesn’t it? When you’re told you have a limited amount of time to live, that’s what comes to mind. I mean after all the emotions that fill you after the word, ‘terminal’.

I know firsthand what it’s like to have a loved one die without a will. It’s a mess. My mother didn’t have a will when she died in 2016 and it left a mess for my sister to fix. She did her best to convince my mom to make a will but I think in my mom’s mind she just couldn’t do it as I believe she was convinced that if she made a will that would be ‘the end’. She would die.

My husband also refused to make out a will. I asked him several times in the last few years he was alive. His excuse was always, “Well, your my wife, you would get everything anyway, so why waste the money?”

Unfortunately, the government doesn’t recognize these things as legitimate excuses. They still want their paperwork and they want it soon. So, for the first month after my husband died I had to fill out paperwork, I had to prove I was his legal wife, I had to prove he didn’t make out a will. It was exhausting and I never got time to properly grieve for that first whole month. It makes things so much worse for those left behind if you don’t have a will. So, Please, PLEASE make out a will and file it away just in case. Make it a little easier for your loved ones to grieve.

I made a will after my husband died. There is a very wide practical streak in me somewhere. I think I get it from my dad, (he didn’t make a will either though!). It needed updating though as it was made in 2019 and things change. I called my lawyer first thing and we started the changes I wanted to make. He was great, he even came over to the house for me to sign the final papers as I was feeling pretty miserable for a while. Easy, peasy and it put my mind somewhat at rest.

It makes it easier to focus on me and my cancer when I know the paperwork is done. When I made the new will I also made a Personal Directive and an Enduring Power of Attorney. This way I knew that my wishes would be carried out on how matters would go if I was ever incapacitated and couldn’t make decisions for myself. My decisions were all down on paper legally.

Now I’m looking into the MAID law in Alberta. MAID stands for “Medical Assistance in Dying”.

MAID is a healthcare option available to Albertans at the end of life. It allows a capable adult suffering from a grievous and irremediable medical condition to voluntarily request medicine that will bring about their death.
Alberta Health Services

This type of law has always been controversial. I agree with it though. I think people should have a choice if they are faced with a terminal illness. I refuse to suffer needlessly. I refuse to linger in some hospice room slowly dying and in pain. I refuse to become a vegetable just being kept alive by machines. When it’s time to go, I will know and I want to be able to make that decision while still in my right mind. I want the final say, not machines or strangers.

Of course, I don’t plan on having to use this option for quite a while. So far the treatments are working and I will hold this course for as long as I can. It’s just reassuring to me that I do have this option.

For now, I’m not going anywhere. You are stuck with me for a while longer. Until next time, stay happy my friends. I love you all.

Blogging · Cancer

Immunotherapy

Featured JackieP6 Comments

What is immunotherapy and how does it play a role in my cancer journey?

Immunotherapy is a cancer treatment that uses your body’s immune system to find and destroy cancer cells. Your immune system identifies and destroys intruders, including cancerous cells. Immunotherapy boosts your immune system so it can do more to find and kill cancer cells.

Immunotherapy for cancer is a very effective treatment that may help some cancer patients live longer.

I’m getting the “checkpoint inhibitors” type of immunotherapy. Which is this:

Your immune system is a powerful defense system — sometimes too powerful. Your body has checkpoints to keep your immune system from overreacting to intruders and damaging healthy cells.

For example, your bone marrow makes white blood cells called T lymphocytes, or T-cells. T-cells protect your body from infection and tackle cancer cells. Immune checkpoints connect with proteins on the surface of T-cells.

How checkpoint inhibitors work

Checkpoint proteins and other proteins manage the flow of signals to T-cells, telling the cells when to turn off and on. (Think traffic monitors that manage traffic flow by switching traffic lights off and on.) T-cells turn on to kill cancerous cells. They turn off so they don’t damage normal cells.

Checkpoint inhibitors are immunotherapy drugs that work by breaking the connection between the checkpoint proteins and other proteins. Breaking the connection keeps protein cells from telling T-cells to turn off. That way, T-cells keep on killing cancerous cells.
Cancer Centre

I get these treatments every three weeks. I’ve had two so far. I get them at the cancer center via intravenous or IV system. I get an IV put into my arm at every treatment visit and receive the drugs in my blood system. It doesn’t hurt, well sometimes inserting the IV hurts but otherwise, you don’t feel a thing.

I get two different drugs. They are called Lpilimumab and Nivolumbab. For the first treatment, I got both drugs. The second I got Nivolumbab and on my third treatment, I will get both again. This goes on until it stops helping which can last a couple of years. A small price to pay if it extends my life for those years.

Are there side effects?

Oh yeah, there are! Of course, not everyone is the same. Some people get fewer side effects. Some get more. Some people don’t show any side effects for months after the first treatment. It just depends on the person and how the body accepts the drugs.

I started getting side effects the second week after my first treatment. Oh boy did I! Some like skin rashes are just irritating. (Yes, I got the skin rashes first)

Then I started getting open sores. In my mouth, on my wrist and hand where I had previous small sores before treatments. I also got sores in other, um, private places. It made my life hell. I’m not going to lie. I won’t downplay the side effects either. They were/are awful!

I couldn’t sit, I couldn’t eat, I could barely drink water the sores were so bad! They were ‘weepy’ and bloody and were just all-around uncomfortable. Being a diabetic, I needed to eat but it was so painful I had a really hard time of it. My left foot swelled to twice its size, and I developed a lump on my right calf. If it wasn’t swollen, it was itchy or bleeding. I looked and felt like a zombie with flesh falling off!

I was also fighting high blood sugar and high blood pressure. It got so bad I was ready to just call it quits. To say the hell with it. I’ll just lie down and die. I didn’t of course. I’m made of tougher stuff than that. I finally called the cancer center and talked with the head nurse of my cancer doctor. She in turn, talked to the doctor and he decided to give me a ‘rest’. He prescribed some pills that would stop my immune system to let my body recover.

I took those for five days and even on the first day it made a huge difference! I started to feel better and my sores started to heal. I let out a big sigh of relief and had a good sleep that first night. It was so good to start to feel like myself again.

You would think with my immune system in overdrive that sores and rashes wouldn’t happen. The body is a strange and wonderful thing. When it goes into full-force mode, it does all sorts of weird things to you.

Once I took all five days of pills I noticed the sores were starting to come back. So were the itchy rashes. I thought to myself…..”Oh no! Here we go again!”

There is some good news though!! I had my appointment with the cancer doctor yesterday and he told me that people who developed side effects quickly and harshly like I did tend to have a longer life span with my type of cancer! Holy shitballs Batman! It was actually a GOOD thing I got all those nasty side effects!! Who would have thought???

Also, since my doctor is a very good doctor AND compassionate he put me back on the “stop” pills for another 15 days! He said he wanted me completely healed before my next treatment, which he put off until then! Yea!!!

Now at least I will be past the zombie phase until my next treatment which will be sometime in July. So cheers to me!

Goes to show, that even when you are at the lowest point, there is hope. I gathered that hope close to my heart yesterday and am hanging on tight……….