Stable medical condition means a condition that is not expected to exhibit sudden deterioration or improvement and does not require frequent medical or nursing evaluation or judgment to determine changes in the consumer's plan of care; dictionary definition
I've finished the first three months of treatment and the scans show that I am stable. There has been resolution to an existing area and most importantly, no new progression. Thank you Lord! This is very good news. It means the drugs are working! In the oncologist's words, I am doing "brilliantly". To recap, I have a 2mm pulmonary nodule in the left lower lobe of my lung, a spot on my liver, spots on two of my vertebrae and involvement of numerous lymph nodes. It is uncertain how many lymph nodes are involved but of the ones that were sampled, they all tested positive for MBC (Metastatic Breast Cancer). These remained unchanged from the previous CT scan. The left hilar lymphadenopathy, however, is no longer evident and my CA15-3 (tumour marker) dropped back into an acceptable range after being elevated for a while!
Thank you Lord!
I will try to bring you up to date on how I am handling the treatment and hopefully try to convey how I feel about it but truthfully, it changes regularly so I apologize in advance if I ramble. I mentioned in the last post about the skin rash I was having. Thankfully, this resolved after the first month. The only thing I did differently was add in some support for my liver and this seemed to help. I am cautious about natural supplements of course, as they can alter the effectiveness of the chemo but in this case, it was warranted. I would have ordinarily used Milk Thistle as I have in the past but there is some concern about it being mildly estrogenic which would not be good for a hormone receptor positive cancer like I have. And since Milk Thistle can flush the chemo too quickly, which would be counterproductive, I used Dandelion instead. Voila, no rash. I still get an occasional itchy spot but I will take this as opposed to being covered in a rash any day!
Thank you Lord!
At the beginning of this treatment, my hair was falling out at a rapid pace but it has since slowed considerably for which I am very thankful. It has thinned out quite a bit, especially on the top and for someone with ordinarily thick hair, it has been quite noticeable but mostly, only to me.
Thank you Lord!
I was also having some type of neuropathy (pins and needles) in my hands and feet but mostly in my feet. It made walking first thing in the morning fairly difficult. I am not sure what I did or if it was just my body adjusting to the treatment, (maybe the Dandelion as well?) but this cleared up after the second month and now I only have it occasionally.
Thank you Lord!
The sores in my mouth have been few and far between thankfully but now I also get sores in my nose. (I know, right? Ugh!) I have to stay incredibly hydrated and there is a cream I can use to help with the discomfort and for that, I am very thankful! I also haven't had any recurrences of losing my sense of taste!
Thank you Lord!
I still have trouble staying warm at times and with that unfortunately, comes the chills. There really isn't a great fix for this, or at least not one that I know of yet. I'll lay shivering under layers of warm blankets, even with fuzzy socks and hot tea and just when I am starting to feel somewhat warm, enter the hot flashes and sweats and off come all the layers! Repeat this several times throughout the day and night BUT, it is getting more manageable than when I first started treatment and my fingers haven't been changing colour so that is good!
Thank you Lord!
I still get incredibly tired. Honestly, I think that this is the most prevalent symptom that I have at the moment. Oh so tired. On top of the chills/sweats preventing sleep, sometimes I just have plain old insomnia. And if you know, you know it is a terrible feeling to be awake and so tired and yet be unable to sleep. Especially when the rest of the house is peacefully asleep. Especially when you know how tired you are going to be the next day! I am currently working with my Doctor to find something that I can take that will help in that department but will not leave me unable to function the next day which regular sleeping pills do. I take melatonin as well. Thanks to some generous friends (you know who you are!) I was able to go for a relaxation massage (one friend paid for it and the other friend generously gave up her appointment for me as they were booking months in advance). Oh my! Game changer! I can't remember when I have felt so relaxed and I slept so incredibly well that night! I'm very thankful that I have tools available to help me when I get desperate. And great friends as well!
Thank you Lord!
With the wildfires mostly extinguished, we can get back to walking outside which I am also soooo thankful for! Walking helps me in so many ways and not being able to walk is so hard in just as many. Not just for the physical benefits but also the emotional benefits as well. As soon as I feel the anxiety building, if I can get out for a walk, my head clears almost immediately. I am also focusing on giving my lymphatic system and my mitochondria a boost as well and for this to happen, some sort of physical exercise is imperative. But really, I am just so happy to be able to get outside in the fresh air and walk!
Thank you Lord!
So how am I? Well, I am very thankful! 😀 A stable scan is so great and it means I can relax just a little bit. At least until the next scan anyway. But I am also many other things as well. Sometimes I am still scared. When the sheer reality of this and what it means hits me, it is scary. I know that I could manage this for many years yet. Thanks to online support groups, I see the people with success stories who are living somewhat normal lives and managing their disease. Due to these same groups, however, I also see the heartache of the ones who aren't and don't. And the ones, who like me, are learning to just manage in the best way that we can. We have no idea if there will be a long term. We live day to day. Scan to scan. We don't have the luxury of being able to chalk up every single new ache or pain to just growing old. So is there fear at times? In a word, yes!
Sometimes I'm angry. Ugh. I hate this! I want to be content with a cheerful and happy heart and yet, I'm angry. These drugs are hard, especially the letrozole but I can't blame everything on it. Sometimes my anger is from me. I'm not so much angry about cancer but I see the world and the mess it is in and see how horrible people are to each other, the horrible things they say and do to each other, and on top of it making me sad, it makes me angry. What happened to common courtesy? Respect? Kindness? When did it become ok to wish ill upon each other? Coming from someone who is fighting an illness, especially one I wouldn't wish on anyone, I find this kind of behaviour disgusting! And it makes me angry.
Sometimes, though, I just feel sad. And alone. Ugh. Alone in a way that only someone that is going through the same thing can understand. Please, if someone you know and care about has a terminal disease, or any disease for that matter, please take a few minutes and read up on that disease (Even just here for MBC for example. Very little time and attention goes to understanding this disease. Only 5% of Cancer Research Funds is spent on Metastases) It can be exhausting trying to explain what we are still learning ourselves. I know most people have very little understanding of MBC and I'm thankful in that it means they've never had to deal with it but it also poses some problems as well. Here are a few of the things I hear.
"How are you?" This one is tricky because I know you mean well. I am so thankful that people care about me, truly. But do you really want to know how I am? I know you want me to say I'm fine! But I'm just not fine all of the time.
"You're going to beat this!" There currently is no cure for MBC so I will have it for the rest of my life. So although I might not beat it, I do hope to live with it. For a long time! Possibly, and hopefully, in the same way anyone with a chronic condition lives but then again, it could also very well take my life. That's not defeat, that's just the reality. NED (No Evidence of Disease might not be possible for me anymore but I can still hope and pray for NEAD (No Evidence of Active Disease) for as long as the Lord lends me breath.
"Are you still on chemo?" Yes, I'm still on chemo. I take an oral pill for three weeks and then I take a one week break. When do I finish treatment? When it stops working.
"But you still have hair". I get asked all the time why I still have hair. The type of drug I take targets cancer cells directly instead of regular chemo, which goes in kind of like a bomb and destroys much more than just the cancer.
"But you don't look sick." Yes, somedays I look ok. (See answer of targeted therapy above). Anyone with a condition that is not visible can relate to this. Targeted chemo can be easier than regular chemo. But it's still not easy. If you see me out and about, that's because I am feeling good! You most likely won't see me if I'm not.
"You're so strong." Um, no I'm not. If you know me, you know how very not strong I am. If anything at all, somedays I know where to get Strength but I assure it does not come from me! I am weak and helpless. Truly.
"God knew you could handle it." If this were actually true, I would literally be one of the last people God would choose. I'm someone who fails Him regularly. I'm someone who knows the right thing to do and doesn't always do it. Someone who regularly does the things I hate. I sometimes "handle" it by hiding and crying. No, no, I assure you, this is false.
"How long do you have?" Does anyone really know the answer to this? My days have been numbered. I have as many of them as will be given to me. I choose not to focus on statistics but I would be remiss if I didn't at least acknowledge that the median life expectancy for someone with MBC is thirty six months. (26% surviving 3-5 years) and only 11% reaching ten years. Could I be one of the 11%? Absolutely! I hope so! But are my affairs "in order"? Also yes.
"Don't dwell on death". It is uncomfortable to talk about death in our culture. It remains largely a taboo subject so when I am trying to wrap my brain around it, I am not necessarily "dwelling" on it. I still have trouble processing it all though. I want balance. A way to understand and be prepared but not obsessed. I realize that I am trying to understand something that I have not yet been given the Grace to go through and I think trying to know the unknown can be scary. I am not afraid of death per se but I can't exactly say the same thing about dying. And I think that makes me pretty normal. Yes, I am doing well at the moment and I am so very thankful for that but I also know how quickly that can change. I am very thankful for my support people who I can talk to at anytime, even sometimes in the middle of the night when sleep evades me! I am so incredibly thankful for each of you! Thank you for being there and for bearing with me and for letting me process out loud!
As you can see, I need the Lord desperately. Desperately. Each word has to be tried to determine if it is honouring to Him. Each thought taken captive. Search me Lord to see if there is any grievous way in me. I don't trust myself to decide on my own. I can't always trust how I feel. In fact, I usually can't trust how I feel at all. When I try to look too far into the future and I give in to fear and doubt, I feel terrible and I long to be brought back into fellowship with Him. I am prone to wander, Lord I do feel it! I am prone to leave the God I love. I am so thankful that He doesn't leave me! And I am so thankful for the peace and the calm I receive when He restores me and renews a right spirit within me. He doesn't cast me away and He doesn't take the Holy Spirit from me but He restores unto me, the Joy of His salvation. And renews a right spirit within me.
Thank you Lord!!
Create in me a clean heart, O God, and renew a right spirit within me. Cast me not away from your presence, and take not your Holy Spirit from me. Restore unto me the joy of your salvation, and uphold me with a willing spirit.
Psalms 51:10-12
Your friend Maria. Is a friend of mine. I am glad to hear your good news of stability. Praise God. I am a stage 2b BC mom to nine kids. I have been on Aromasin for five years, awful, but hopefully, helpful meds. The aches and pains and neuropathy get bad sometimes. I will pray for you. And I LOVE City Alight especially that song.
ReplyDeleteHello! Nice to “meet” you! 😊 Thank you! Praying for you as well! Glad to hear they are working for you too! ❤️
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