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!

Surgery avoided - WHEW!

After 2 days on IV only, it looks like my body is healing itself and Lahey will not have to perform a surgery to fix the blockage. Big, relieved exhale!! The possibility of having to undergo another abdominal surgery so close to the last one (just as I am getting mentally prepared to start 4 months of chemo) was unthinkable. I had to schedule a visit with the oncology psychologist yesterday to help me figure out how to deal with this (and possible future) setbacks.

My doctors are ordering up some simple foods for me to try. If I can eat without getting pains again, It looks like they will discharge me. I now understand how important it is to stay hydrated and pay attention to the signals my body is sending me. I will need to be more cautious about the foods I eat until my ostomy and abdomen have healed and I am more familiar with my new "remodel". I shall consider it a lesson learned (albeit a painful, expensive, and time-consuming one) and will do all I can to avoid future trips to the ER!

Thanks to all who cheered me through this ordeal! Thanks to Sage, Marion, Brenda and Steve for keeping me company and tolerating the stale hospital air here! Hopefully, very soon I will be back on the path to recovery.

Love you all! 💕💕 Jane

Back at Lahey with a complication

Late last night Jane started feeling intense pain in her abdomen as well as some nausea. After a few hours waiting it out and several phone consults with the ER docs we decided to head to Lahey ER to see if they could help. Once evaluated by the ER docs they agreed that a catscan was in order but in the meantime they gave her meds to help with the pain and nausea, which worked well.

The results of the catscan showed what appeared to be an obstruction in her small intestine. They think that possibly scar tissue from radiation or the APR surgery may have created a narrow area where food could get stuck. Bowel obstruction is usually first addressed using a gastro-nasal tube through the nose into the stomach. Suction is applied in an attempt to get rid of the obstructing materials. The tube often stays in place for several days.

Jane is being admitted to the hospital now and will remain here for a few days or until the issue resolves. She is disappointed, but not totally surprised - we were told APR surgery does come with its share of complications. We are hopeful that the tube works and that no further intervention is needed.

We will post more as soon as we have more information. Thanks for checking in!

The real glory is being knocked to your knees and then coming back - Vince Lombardi

I am rebounding! We are just back from apppointments and tests at Lahey with my oncologist, plastic surgeon, and ostomy nurse. My blood tests look good as do my incisions! The last of the (non-dissolvable) stitches were removed today! I have long, dark scars running down the inside of each thigh and got approval to start using scar cream on them. Although I imagine they will look better over time, I expect it will be long shorts and skirts for this girl from this point forward. I was disappointed to hear that I won't be able to sit for another month, which means driving is out for another month as well. My plastic surgeon has put the fear of internal tears, infection, and incision failure into my brain, so I guess I will be compliant!

After consulting second-opinion oncologists at Sloan Kettering, Beth Israel and Johns Hopkins, I have decided to go with my oncologist's recommendation for the more aggressive chemo treatment. Because my cancer is rare and aggressive, this seems the most prudent approach. Although this treatment will be tougher to tolerate than a less aggressive regime, it will likely give me the greatest chance of recurrence-free survival - and that is my goal!

My chemo treatments will start on May 17th. I will have to go to Lahey next week to have a chemo port installed in my chest. Treatments will involve 1/2 day infusion of oxaliplatin, followed by a 48 hour (pump) that will infuse 5-FU via the port for 48 hours. This treatment will happen every 2nd week for 4 months. I should know within the first month how I am tolerating the chemo, and am hoping I can come up with a way to go back to work part-time throughout the 4 months. I am a terrible couch potato!

I want to thank everyone who has filled my past few weeks of healing at home with fun visits, walks, flowers, and meals! When I look back on this recuperation, I think that what I will remember most will be the many smiling faces who brightened my day, the healthy and delicious food that magically showed up at our door, and the scent of flowers filling the kitchen. You all have transformed a potentially dark and difficult period into a time of joy, love and gratitude!

THANK YOU 💕💕💕💕💕!!!!!