Protecting others from the negatives of my diagnosis

So, I see an amazing counselor at Roswell who has been absolutely wonderful throughout everything. During our session today, I realized that my balancing act of always countering the bad with good was about protecting everyone around me so they didn't worry as much. That doesn't mean that the positives aren't true. It just means that I'm intentionally using them to make other people feel better about my cancer, my treatments and my symptoms. I don't want people around me to feel bad because of me. 

I'm totally going to continue doing this but I'm going to try to do it less with people in my inner circle. On here, however, I'm going to protect. Because I want people reading this who may be recently diagnosed to know what to expect in all aspects. During treatment, we have bad days and good days. Frequently the bad days outnumber the good days and the "good" in "good days" is directly related to the "bad" in "bad days". My "good" chemo days would not be the same as good days when I'm not in chemo because I still don't feel great, my brain just randomly shuts down on me, and I can't do nearly as much as I can do on normal days when I'm not in chemo.

If you are someone who is not going through this but know someone who is, don't try to force them to be more positive about it all because some days you just need to let yourself feel how crappy it is. But you can see if you can do anything to help make the less sucky days better. Yes, being positive can have a huge impact on how people tolerate the treatments and helping them get to the other side of them to get rid of the cancer altogether but when other people try to remind you of the good things with the intentional of trying to get you to feel better about it while also not knowing how crappy it all is, it's so frustrating.

It's interesting that I feel the need to make others feel better about my cancer diagnosis and treatment when other people want to help me feel better about everything. I don't want others to feel bad for me. I don't want pity. I also like talking about the cancer stuff because right now, that is my life. It's also really interesting. There are so many cool new developments in cancer research, treatment and detection that I wouldn't know about if I did't have cancer. So, the balancing act helps me be able to actually talk about the cancer stuff without drawing pity from those around me.

And I really am OK. 

Tired... so tired!

I forgot how tired I get on chemo. It's this level of physical and mental exhaustion but yet I have trouble falling asleep and I just sleep crappy. That weird awake but not awake kind of sleep mixed with chunks of actual sleep and waking up more.

The physical part is this combination of shortness of breath, feeling crappy, and even getting up to do simple things just takes a lot out of me. I lay in bed for awhile after a short shower to recover. I should just take a nap then but I usually have something else I need to be doing. I try to do other things in spurts. I'll rest and recover for awhile and then get up and unstack and restack the dishwasher. Then I need to go lay down again for hours.

The good news is that it's not every day of the cycle. I seem to be most tired on the day the pump comes off and the day or 2 after that. I start being tired on the infusion day and just get more tired until the day or 2 after the pump comes off and then I start to recover back some of my energy and sleep at least a little better. 

Chemo is hard. I can't tell you how many times I told my husband that chemo sucks between this cycle and last. It makes sense that it's hard though. I'm infusing medications directly into my veins that shouldn't even touch your skin. I have a chemo med spill kit with a gown and gloves in my home just in case something happens to the pump and it leaks. Chemo meds are really bad for you. Unless you have cancer. 

I can feel and see the impact that the chemo meds have on my body on a daily basis and in my bloodwork. But that means that they are working. It just sucks that they have to be so destructive to the rest of the body while taking out the cancer cells. 

Nausea was better this round but I stopped taking the meds too early and still feel meh. I get this weird shiver sometimes rather than a nausea feeling. I'll think of something that makes me nauseous or drink water and my whole body just shivers. I'm going to do better about continuing the nausea meds for longer next round. 

The gross taste in my mouth is back. I do what I can to keep it out of my mouth but sometimes it means I just keep eating and gaining weight to keep the taste out which really doesn't help in the long-term. I'm working on finding something that helps but it's a challenge. Most things only help for a little bit, not any significant length of time. I've been chewing some gum and having some mints. Sometimes I brush my teeth or gargle with salt water. I need to make a run to TOPS and pick up some Metaquil. Last round, the PA prescribed Zinc as well but that's more of a long-term fix than short-term. I may need to add that this time as well. All those help a little, it's just bouncing back and forth between them. 

The extra eating and everything else just exacerbates the indigestion/heartburn I get from the chemo so I'm back to taking Pepcid for that. Everything is just not fun. Also, because the meds are rough on my body and because I do struggle drinking water, I need to use stool softeners/laxatives at times to help me have a BM and/or to make it less painful. It gets more frequent the further I go through chemo.

Some days it doesn't feel like I can handle this. Some days I just want to quit. And that's ok. I know I am allowed to feel that way. I also know that I can handle this and I'm not going to quit. Cancer is not going to beat me. This is just a brief window of time in my life and we all have crappy times in our lives. So, I'm gonna let myself feel crappy on crappy days and the days that I feel a little better, I'm going to do more and recover and enjoy feeling a little better. And then I'm going to do it all over again.

Also, for all this complaining I'm doing, it's important to mention that I also had time and energy to go to a Committee meeting this week (on disconnect day before I was disconnected) as well as to decorate my car and take part in Trunk or Treat at my youngest son's school (the day after I was disconnected). I also got another day of subbing in at the end of last cycle just before starting this cycle. So yes, I feel all those things but it's not hard 100% of the time and it's really important for me to recognize that and to do other things when I can. Those things help me remember that I CAN get through this. It can be so easy to just get sucked into focusing on the hard parts (especially when you have such a long history of depression like I have) so, without diminishing how crappy those parts are and while acknowledging those feelings and allowing myself to have them, I have to also actively engage in and be present in the good moments so those memories and feelings are as strong or stronger than the negative thoughts and feelings. Balance is so important.

Anyway, 2 rounds done. 4 to go before a break and surgery.

Round 2 of 6 - Prior to lung surgery

Well, round 1 was rough with the nausea. The Zofran didn't do enough and I hadn't picked up more prochlorperazine or the cannabis. So I was miserable for days. I also had headaches and it always messes with my stomach and even drinking water made me nauseous for days so a few days I got maybe 4-6 oz of water in. 

But the cold sensitivity wasn't as strong last cycle. I managed to still have smoothies a couple of days in which gave me more fluids and my smoothies are more nutrient dense. I did have to drink them very slowly over a couple of hours to warm each sip up in my mouth before swallowing. This time around the throat is more sensitive so I'm going to wait another day or 2 before attempting a smoothie, if I attempt it at all. Right now, drinking room temp water too fast is very uncomfortable but I can still warm it in my mouth before swallowing it. At some point, I may not be able to do that because my mouth itself will also get pins & needles with cool things.

I have been able to drink some water. Last round I put a new filter in my fridge and it did help the taste of the water some but not enough though honestly for most people, my water is decent. I'm even picky about different bottled waters when I'm nauseous. So, I bought some Smart Water this time (though i hate buying bottled waters) and I can tolerate the taste even when I am nauseous. So that's helping me get more fluids in.

This time around, I'm skipping the Zofran and trying a combination of Prochlorperazine, Dexamethasone (2mg in the morning days 2-4) and cannabis chewable gels for the breakthrough nausea. I am also going to try to make brownies with the tincture. I have individual brownie pans so I can measure out the dose per brownie.

As far as cold sensitivity goes, definitely felt some in my throat last week and more this round. My hands felt slightly more sensitive to cold last roung but that has definitely increased this round but no pins & needles yet.

A normal chemo session for me

This is how a normal chemo session looks for me...

Arrive at facility (I go to the new Scott Bieler Amherst center for my infusions and they are amazing!)

- I go upstairs, check in and wait for my appointment.

Blood work (unless I had my bloodwork done the day before and got the all clear) 

- They get me settled into a chair, access my port, draw blood and send it to the lab for testing. They also check to see if I need a pillow or blanket or anything to drink or eat. Then I sit and wait until the bloodwork comes back.

Pre-meds (These are medications intended to be used to help with nausea though they may help with other symptoms as well. They change from time to time based on what's working for me at that time and if I need a change.)

- As long as my bloodwork goes ok, I get started on my pre-meds. I don't remember all of these - 1 is a steroid (2 pills) and 2 others are injected directly into my accessed port.

- At this time, they also start me on an IV drip of fluids. 

- After the pre-meds are in and the IV drip is started, I chill out for another 30 minutes while I wait for the meds to get into my system so they are working when they start the infusions.

Infusion time 

- I get 2 medicines that are delivered over 2 hours.

- Leucovorin - basically a really strong folic acid. It is given before 5-FU to make the drug more effective.

- Oxaliplatin - a platinum-based chemotherapy drug. It damages the DNA of cells and stops it from being copied with the intention of stopping or slowing the growth of cancer cells and causing them to die. It works on cells that rapidly grow so it can affect other cells within the body as well. This is the drug that causes the neuropathy symptoms in me and was part of the reason my hair thinned so much during the last treatment.

- When those are done, I get a 12 minute bolus of the Flourouracil (5-FU) that will be coming home with me in my pump.

Pump Hook-up

- The home care company nurse comes in to the infusion center and hooks me up to a pump that will deliver the Flourouracil over 48 hours at home. Then I go home!

- Flourouracil - a chemotherapy drug that stops the cancer cells making and repairing DNA which stops the cells from growing and multiplying.

Pump Disconnect

- 48 hours after my pump is hooked up, a home care nurse comes to my house to disconnect me and flush my port. Then I'm done until the next cycle starts. 

- At the first pump hook-up, I take home a box with supplies for the disconnect visits. It includes a folder with information about the homecare company and contact information, a sharps container, saline and heparin to flush my port after disconnect and a chemical spill kit and things like bandaids and gloves. I also get a bag that holds the pump that I bring back with me each visit. The pump itself gets disposed of. Last time I did chemo, I had a mechanical pump with a battery that I would hang onto between sessions and bring with me to each new chemo.

- After the first pump hook-up and prior to disconnect, there is also a visit by the home care nurses to admit me into their system/care where we go over medications and get a quick checkup to make sure I have everything I need, know how to care for the pump and myself, and know how to contact them if I need anything or have any concerns.

- Every 2 sessions (It may have been every session initially last time around but did move to monthly), I do my bloodwork a day in advance and meet with my doctor at Roswell prior to the session to check in on how I'm doing physically and emotionally, and to see how it's going, how I'm handling my treatments and if they need to tweak any of my medications.

Back to chemo - Round 1 of 6 prior to lung surgery

I started chemo again yesterday. A few changes since last year. 

1. The oxyplatin dose was reduced to 80% because last year the neuropathy was so bad and I was having trouble swallowing pills and always felt like I had a lump in my throat.

2. The pump that I take home with me changed. In the past I had a mechanical pump with a battery and a timer. Now I have a much lighter little elastomeric pump that looks like a little lemon. No battery. The medicine is in a balloon that constantly puts pressure trying to push the medication out and there is a flow-restrictor on the tubing that uses my body heat to control the flow of the medicine. 

3. I tried Zofran this time instead of the perchlorperazine. I also have a cannabis prescription (1:1 THC:CBD) but I haven't refilled that yet.

How it's going...

The infusions went well yesterday. When they were setting up the oxyplatin, I was told to watch for itching in my hands because after 6 rounds of oxyplatin, the body can develop an allergy to it. If I develop itching, they will give me meds and then future rounds, the medicine will need to be delivered over 4 hours, not 2. Luckily no itching this round.

I was doing ok until last night at dinner time when I took the Zofran. I got really tired, had a headache, and felt a little of that medicine-head type feeling. So I went upstairs and went to sleep. I woke up a few hours later and still had a headache but not as bad and not so much on the medicine head feeling. I was up for a bit to do my nighttime routine and play games on my phone while I tried to get the energy to do my nighttime routine (inhaler, teeth, nightguard, nose rinse, flonase, bathroom - nothing crazy).

My mouth and throat are definitely more sensitive to the cold right now. It wasn't too bad with room temp stuff and I wasn't getting any pins & needles on my hands or feet so I got brave and made myself a smoothie (about 10 oz of almond milk, ~5 oz Fage 0% greek yogurt, 1 banana, 1 tbsp chia seeds, 2 tbsp ground flaxseed meal, & about 1/2 c of frozen mixed berries or strawberries) for my my lunch since I ate crap for breakfast. I am able to drink small sips, let them warm up in my mouth before swallowing and wait for my mouth to warm back up before I do it again. I'm eating seaweed in between sips because seaweed is delicious! 

My body feels a bit blah but my nausea is barely noticeable so I'm not taking anything for it at the moment. Generally the flourouracil just makes my stomach/body feel weird. Not necessarily bad but not good either. I also tend to get constipated during it so I keep a stool softener/vegetable laxative on hand as well. Unfortunately, you will probably hear a lot about my bowel movements because I have to tell just about every doctor and nurse that I talk to how well I'm passing my bowels. Sometimes I just want them to say poop. Just because. It would be a lot more amusing.

I get coronary vasospasms from the flourouracil so I have to take amlodipine. Unfortunately, I didn't realize my pharmacy hadn't filled it until Friday, so I called them and they filled it that day but I forgot to pick it up until Monday afternoon so the first day I took it was on the day of chemo. So I did/do have some chest discomfort but nothing major. I'll take it easy between now and the next round and by the next round I'll have had the amlodipine in me for a solid 2 weeks so I should be good to go then.

Otherwise I'm doing ok. Yesterday and the night before, I was definitely not feeling good about chemo. Not quite dreading it, but close. I know I can handle it and I know what to expect but for sure it's not fun. I still got this though!