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