Chemo Cocktail #6

Chemo cocktail #6 hit me like a ton of bricks, and I pretty much had to go straight to bed when I got back from the hospital yesterday. I am told the later chemo sessions are the worst. The weird (but now familiar) side effects are back: extreme sensitivity to cold, cramping in legs, feet and hands, soreness in mouth and jaw, burning when I pee out the caustic cocktail (courtesy of prior pelvic radiation), and lack of appetite (only weird because I usually have a great Italian appetite)!  Now I am up early from the dose of steroid they give me with the oxaliplatin. No way am I falling back asleep with this stuff coursing through my veins. I guess this is becoming my regular blogging hour.

My blood tests yesterday show dropping RBCs and low hematocrit, which I think is causing the tiredness. But my WBCs are staying high enough that I don't have to worry too much about germs, or needing an infusion. I saw my radiation oncologist this week and she said that I probably have "good bone marrow", meaning my blood is better able to respond to the onslaught of chemo. My hair continues to fall out, but I still have more than 50% of it. Glad I chopped it - the thinning would be much more noticeable had I left it long.

The last 2 weeks have been busy with work and fitting in as many summertime activities as I have energy for. Finally got my big EPA grant and budget pulled together and we plan to upload it next Monday. Huge sigh of relief once that is done! I do enjoy getting out and usually feel better afterwards. Living a life as close to my normal one makes me feel more optimistic and more like the "real" me. This seems important to my physical and mental health right now.

Thanks to friends who have accompanied me at the hospital and on walks, meals, and movies! Thanks to those of you still checking in during this long, drawn out ordeal! It seems like forever since I started chemo and radiation the end of 2016. But I am seeing a light at the end of this tunnel and am feeling pretty optimistic right now.

Love you all ❤️

Enjoying the little things in life

Good morning! Another early AM blog thanks to steroids. Yesterday they hooked me up to infusion #5, and I talked my oncologist into reducing my dexamethasone (steroid) to 4 mg. I think the lower dose helped me sleep a wee bit more -  but here I am, up for the early am "blogging hour"...

I feel that the the effects of this chemo are getting a bit more intense and lasting a bit longer each time. I have been petty tired at work, and am so thankful I have these three infusion days off.

That said, once the chemo leaves my system I feel much better and have been enjoying life as much as possible. We spent last weekend on AMC's Three Mile Island (Winnepesaukee) where Rory works. I am noticing that I am doing way less here than I did when we visited prior summers. Usually I kayak, hike, paddle-board, and swim a ton. This year it seems it is all I can do to undertake a few-mile kayak and some hiking around the island (mostly to the main lodge for meals). The chemo has steadily dropped my RBCs and hemoglobin and I am starting to feel fatigued more easily. I had to opt out of the 11 pm full-moon paddle that Rory offered us, I was 3/4 asleep! Steve went and said it was lovely. I am trying to not be hard on myself or disappointed about my reduced activity. 

Perhaps this is a good life lesson - adjusting to my new normal and being as satisfied as possible with things as they are. I tried to focus on enjoying the smaller, simpler things that one can do on the island. For instance, I had a few totally lovely walks through the sun-dappled paths on the way to and fro our little cabin, I had a warm and delicious solar shower from lake water that had warmed in the sun on our deck all day, and a meditative cup of tea with Steve while looking out on the lake from the front porch of the main lodge, breeze blowing in from the White Mountains. I find it helpful to remind myself to not get caught up in my own expectations - to be receptive and thankful for the small moments of joy and beauty that are happening all around me - especially on a lovely summer day. Some of these lessons that cancer is teaching me will hopefully get generalized when my normal life returns.  Life lessons indeed! 

Thank you everyone for keeping up the support. I am so lucky to have you all at my side ❤️

Early AM blog, courtesy of chemo steroids!

Blogging at 4 AM - giving up on trying to sleep while on this damn dexamethasone! Yesterday I did convince my oncologist to let me skip it on infusion days 2 and 3, but he thought skipping it yesterday when they gave me the oxaliplatin was a bad idea. I think they just don't want patients puking in the infusion room😝!

There is good news this week! Although my blood counts have dropped, esp RBC and hemoglobin (which I am generally low on anyway) nothing is scary low. At this point in the game (1/2 way in) my onc. thinks I'll probably be able to make it through all the treatments without a break or blood transfusions. When the chemo starts leaving my body I feel pretty good. I had a great weekend in coastal Maine last weekend (pre-chemo) with dear old friends and I was able to kayak with the seals, osprey and porpoise - horray! Getting back to the activities I love makes me happy. My hair is falling out, but not too horribly. Not sure if it is the chemo, or classic 2-month post-traumatic-surgery hair loss. I did lose hair about 2 months after my bike crash and surgery. And my weight seems to have stabilized at about 12 pounds lighter than what I was pre-cancer, which is a good thing. I had 12 to lose! Although tiring, work is going well. I got one of my big grant applications in to EPA to review this past week. Our attorney is still acting as Director of my division until I am back full-time so I don't have to worry about all my supervisory duties, etc. 

I hope you all have a GREAT 4th weekend! Steve is excited that we will finally get up to VT for a weekend and I should be recovered enough from chemo to celebrate a bit - maybe even to keep my tired ass up late enough for the fireworks!  💥 💥 ☄️☄️💥💥

Love you all!!  Jane 

Endurance...

Just had my chemo pump removed - such a relief! This time I skipped the steroid on infusion days 2 and 3 and was able to sleep better, but had more nausea. Seems each medication poses a trade-off, providing some benefit, but also undesirable side effects. I think I prefer skipping the steroid and putting up with a little nausea in order to get better sleep. 

I went back to work on June 5th. That was a non-chemo week for me so I worked full-time for the whole week. It felt good to be back with my co-workers and a more productive schedule, but I was exhausted by Friday. This week, I was off Wed-Fri for infusions and am glad that I didn't have to go to work with the nausea-inducing chemo pump attached!

Seems like this part of my year of treatments is the part taking the most personal endurance. Yes, the chemo-radiation was tough, especially the last 4 weeks, but it was relatively short and it was my first treatment so my body was still pretty resilient. Yes, the surgery was brutal, but my main task was simply to adjust to the changes and heal afterwards. BUT now ...this 4 months of chemo comes on top of the other treatments that have taken their toll. This part of the treatment requires me to deal with multiple sequelae from prior treatments and to endure the port, nausea, exhaustion, and a myriad of side effects which seem to become more intense and last longer each time I get an infusion. I know that I will get to the end of this - it just feels like a total slog, both mentally and physically.

I am taking advantage of the times that I feel OK by getting out and enjoying life, friends, food, and have even gone to the gym a few times. It really helps to have good days amongst the tough ones. Thanks to everyone who has helped me enjoy those good days - and for those who have sent me encouragement on the tough days. I really couldn't do this without y'all!!

Chemo cocktail - not as much fun as a real cocktail!

The second chemo infusion started yesterday. Like last time, they gave me oxaliplatin in the infusion room (about 2.5 hours), then hooked me up to a pump with 5-FU that is now tagging around after me, pulsing micro-portions of poisons (oooops - I mean medicines) into my jugular vein for 48 hours. They dose me with dexamethazone to try to prevent some of the side effects of the chemo and it helps, but makes me kind of hyper and more than 4 hours sleep is impossible on infusion days and a few days after. Talk about adding insult to injury.

The good news is that the regular and painful abdominal issues seem to have ceased! Not sure how to explain that - but I'll take it. Also, I am starting to sit upright for short periods of time and have been given permission to start driving.

So, I still have a few days to get through this infusion and aftermath, but it is looking like for the rest of the summer I can expect a good week (the week w/o chemo) and a tough week (the infusion week). Knowing that, I plan to return to work on June 5th, which should be a "good week" and then take 3 days off (Wed-Fri) the following week for infusions.

While somewhat hesitant about returning to work as a "bag lady" and with everything else going on health-wise, I am also excited to get back to a more normal, productive life. First priority task - there is a large sum of money at EPA designated for the next fiscal year of work on Lake Champlain - I need to get our grant application in this month before it (or EPA) disappears! 

I really appreciate all your support - so many people checked in to see how infusions are going and give me encouragement. I can't tell you how much this cheers me on! Love you all! Xoxo

First chemo infusion done!

First chemo infusion session (Wed -Fri) finally done. One down, seven to go. 

It has been a rough first session of chemo with exhaustion, pain, and nausea, exascerbated by some remaining partial and painful intestinal blockage. My oncologist almost delayed the start of chemo on Wednesday morning when he heard I was still having abdominal pain, but since the pain has been ongoing on and off since surgery he decided it is probably just part of the healing process that I am going through and not a sufficient reason to delay everything. I was glad not to have to delay - just wanted to get this started and over with!

I'm on a liquid diet today in the hope of better clearing things out. At least now we have some idea what to expect in upcoming infusions. I'm disappointed to be so laid low by these, but am hoping that the pain subsides and my energy comes back in the next few days as the chemicals start to leave my body. Oxaliplatin and 5-FU are getting ported straight into a major artery in my neck- they actually sent me home with an emergency manual and toxic waste cleanup kit should the pump or tubing break and chemicals leak out. The kit is marked with symbols like this: ☠️! 

Everyone has been so kind and helpful! People have asked about helping with transport for infusions and Steve is thinking he wants to be there for most of the Wednesday infusions but perhaps could take a break from some of the (shorter) Friday trips to Lahey where they remove the pump and stabilize the tubing until the next session. The Friday visits are only about 1 hour, and we will post a few Friday dates on Helping Hands should anyone be free and want to take me on an upcoming Friday.

THANK YOU ALL!! Xoxo! 

 

Phase 3 starts tomorrow - aggggggh!

Trying to get prepared for starting chemo infusions tomorrow! My recent ER incident, hospital stay, and a few other complications have given me PTSD and seem to have taken a toll on my confidence. I felt much more prepared and psyched for the APR surgery than I do now, so I guess I have some work to do mentally before heading to Lahey tomorrow morning. I DO understand that complications are common with all the interventions I've had, and I do hear my doctors say that my underlying good health means I will likely be able to tolerate all these treatments better than less healthy people, so I need to find a way to take these setbacks more in stride.

Yesterday I had my chemo port installed. I feel like someone punched me in the chest hard. I now have a lump on my chest and a tube going into a major artery to allow chemical infusions. 

Starting 4 months of chemo feels like a lot to endure while I am still very much in recovery mode, but my oncologist says it is best not to delay infusion when errant nasty cancer cells could be floating around my body - looking for a place to take hold. Perhaps this period is the toughest part/lowest point of this whole ordeal? I hope it is not too much to ask - I am hoping that everything goes reasonably smoothly from here on, and any further complications are manageable. 

Thanks for your ongoing support, everyone! xox!