chemotherapy

It has been so long since I last posted on here and I am sorry. The biggest changes that has happened to me since my last post are:
I am on a new chemotherapy that is turning my hair gray (literally) and I have a dog of my own named Emma. #MightyPets #Chemotherapy

I’m wondering if anyone else has noticed that a few days after chemo, anxiety is heightened and depression sets in heavy?

I’ve noticed it the last few times along with the extreme fatigue and generally awful chemotherapy side effects. It’s a little hard to tell if the side effects and especially the fatigue are triggering my major depression and anxiety or if they’re being made worse by them or if it’s just another side effect of the actual chemotherapy drugs?

I feel like it’s worse than just the physical side effects, it stops me from being able to have any kind of enjoyment or sense of purpose or will to keep going period. Plus the physical symptoms of anxiety and depression just add to the physical symptoms I’m already having from the cancer and the chemo. I typically feel good the 1-2 days after chemo and then day 3 I feel crappy with side effects and a sneakily quiet depression and then days 4-6 the physical side effects, the anxiety and the depression are overpowering and take me over completely. I’m not me, I’m lethargic, angry, mean, I snap, I’m disoriented and disconnected from myself and everyone else. I can’t create anything, no art, no crafts, no coloring, no self care, no physical personal care… just laying on the couch staring at my phone or the tv hating the world.

Because of my heart I was taken off my psych meds in August and because I have Medicaid I only see a therapist via zoom once every other month. Which of course helps nothing. My primary care NP is the only one who can refer me to their clinic psychiatrist who prescribes and changes meds, however my PC NP is on maternity leave and that clinic has nobody covering for her patients. The joys of Medicaid in America where good medical care is only for the rich.

#Cancer #BileDuctCancer #Chemotherapy #MajorDepressiveDisorder #ObsessiveCompulsiveDisorder #Anxiety #Fibromyalgia #AutoimmuneImmunodeficiency #metastaticcancer

In April of this year I was diagnosed with stage 4 bile duct liver #Cancer . I’ve been in #Chemotherapy since May. I recently found out I’ll be in chemo for the rest of my life or until it either stops working or becomes too toxic for my body to handle.

I hate chemo, I thought I only had a few treatments left in this “round” but turns out there is no round. My arms are so marked up and bruised from the IVs since I’m a hard stick. I had a faulty painful port put in and taken out, the complication was so severe that I might not be able to have a replacement put in. I’ve lost 53lbs and most of my hair. I’ve developed #ChemotherapyinducedPeripheralNeuropathy . It makes me so sick, so weak, so tired. I’ve had to have platelet and plasma transfusions because of chemo.

The chemo has helped shrink my main tumor from grapefruit size to a lime so far and helped with the spreading so I put up with it and I’m grateful for it even though I hate it.

Nobody tells you that cancer physically hurts. It’s does, a lot. And the smaller that damned tumor gets the more it hurts. Mine vibrates, it’s such a weird sensation. My oncologist and I joke that it’s the wicked witch melting as the chemo shrinks her. Of course I have a dramatic tumor. I have to pick and choose when I take pain killers for it because of my heart disease and fragile heart. So unless the pain is around a 9, I just try to deal with it. It’s been a 7-8 24/7 here lately.

Nobody tells you that cancer doesn’t take away your hunger but it does take away your ability to eat. So you’re just hangry and unable to eat all the time, makes me such a pleasant person to be around I’m sure. The moment I try to eat I’m instantly nauseous and feel full whilst my stomach growls. And everything tastes like crap courtesy of chemo.

Nobody tells you that cancer robs your ability to take care of yourself. It takes your energy, your balance, your strength, your concentration. It leaves you weak and exhausted and ravaged by pain and treatment side effects. I now rely 100% on my mother to care for me as if I were a child, I’m 40. If I try to walk around Walmart for more than 15 min, I pass out. So my elderly mother has to do everything.

They don’t tell you how lonely cancer makes you, how your immune system is so fragile that you’re basically on lockdown. Especially in 2021! I can’t trust others to socially distance or mask all the time or be totally vaccinated and not interact with others who may be sick so I can’t see anyone outside my household which is just my mother and our pets.

When you get told you have stage 4 cancer you’re given a lot of hope, however false (or not) it may be. You’re not told at 40 how to plan for the “just in case but probably the case” or what the legalities are.

Cancer sucks but y’all are great for letting me vent, thank you!

#BileDuctCancer

I’m struggling so hard right now with having patience with my #Cancer treatment, the side effects are frustrating, uncomfortable and painful. I’d forgotten that this sucked. I know that with time the results could very well be worth it, this could save my life. But right now, it sucks balls and I’ve literally just restarted it.

After a 2 month treatment hiatus (not on purpose but for other health reasons)I restarted #Chemotherapy this past Tuesday for stage 4 #bileductlivercancer .

I get 2 chemo drugs, Gemzar and Carboplatin (new to replace Cisplatin, which was causing severe neuropathy). Prior to the hiatus, after 2 1/2 months of Cisplatin & Gemzar my main tumor had shrunk from a grapefruit to a peach, 3 of the 4 lymph node spots had shrunk in half and one was gone. It was a miracle! I felt so amazingly blessed and grateful and more tolerant of the side effects.

Then I had to go into hospital for my heart a few times and temporarily stop treatment so my body could get stronger so I could continue.

Now that all that time went by I’m afraid for regrowth but I’m also finding myself not having the same tolerance physically or emotionally than I did when I first started.

The nausea hit different this time, as did the problems eating. I’ll get crazy intense hunger pains out of nowhere but gag if I try to eat or get uncomfortable after a few forced bites. Everything tastes like garbage. Nothing is appealing. Anything protein makes me feel sick. My stomach ALWAYS hurts because I’m that level hungry. The smell or thought of any kind of food gives me the worst anxiety and nausea. And I’m losing weight way too quickly as well as muscle (yay loose skin). Also I’ve doubled up on the laxatives with no results. And every single symptom aggrieves my anxiety and energy level.

I do have nausea medicine and pain medicine however because of my heart I have to use them sparingly.

It doesn’t help that I had unsuccessful chemo port removal/replacement surgery a week ago. There were complications that were dangerous so we can’t attempt the replacement for another month. Meanwhile my neck hurts a ton. The totality of the stress of the side effects of the chemo and the healing post surgery are just making it harder for me to relax or rest at all or calm down enough to tolerate food.

Anyone have any tips for dealing with any of it? Any advice or support is greatly appreciated.

So last night was a 9 pain night. Had the portagram (no numbing cream) found out I need a new one so one surgeon will remove his eff up and another will put a new on in during a separate surgery (long dramatic story for another time) and was having a bad neuropathy day. So instead of 2 scars I will have 6.

Today I went to see oncologist and get chemo, can’t chemo because white blood cells too low so Neupogen shot instead and another tomorrow. Oh joy!

I also find out the pain I’ve had is definitely a bad case of chemotherapy induced peripheral neuropathy. She gives me Gabapentin and I happily accept. I didn’t want to add more pills but at this point I’d they’re taking my pain management seriously, then yes pls! Long med list? Idgaf.

Also find out I have a cataract in my left eye and that’s why I can’t really see much lately, it’s caused by the steroids given during chemo. It requires surgery which I can’t afford.

I also find out the horrible headaches I’ve been having are from the placement in my neck of the port catheter. Cool. Really freaking cool.

So now I’m just in so much physical pain and so fed up with this cancer treatment process that I’m so completely overwhelmed and numb that I have nothing left to feel anything with. I just want to cry but I won’t because my damn eye hurts 😂 .

#Chemotherapy #ChemotherapyinducedPeripheralNeuropathy #Cancer #CPTSD

Why is taking a shower so freaking draining now being chronically ill? So much drama, full on panic attacks, can’t breathe, exhausted... and I have a shower chair. I used to love my hotter than the Caribbean sun 1-2 hour showers. I did my best thinking and planning and relaxing in there. It was my happy place.

Now my former happy place feels like a luke warm torture chamber that I have to tolerate for 5-10 minutes. It requires planning, having some sodium, preparing ice water, placing everything within reach, taking a nap beforehand and having everything ready so I can get in bed immediately afterwards. These days it also requires assistance from my mother. And I end up with panic attacks from not feeling good whilst in the shower and then those lead to panic attacks about how much worse this could get and then I end up crying myself to sleep.

Stupid chronic illnesses stealing all our joys and happy places! Who else is tired of the shower drama?

#ChronicIllness #PosturalOrthostaticTachycardiaSyndrome #CongestiveHeartFailure #BileDuctCancer #LiverCancer #Fibromyaliga #Chemotherapy #Anxiety