What Cancer Taught Me (pretty long blog)

It seems important to reflect on the past year, while the difficult and poignant events are still fresh in my mind. Cancer has actually taught me a lot. It is strange to think that going through your worst nightmare could leave you feeling grateful, stronger, and wiser, but that is what has happened. Yes, I got an aggressive "CANCER" in my 50's. By "CANCER", I mean a disease that is aggressive, deadly, rare, and has defied most modern-day treatments. Mine was not a (lower case) "cancer" that is well understood, easy to treat with multiple treatment options, and a history of good outcomes. Nonetheless, my CANCER taught me many important things that I believe will make the rest of my life happier in many ways. Some of the things I have learned from having cancer:

1. Every second of life is precious, even those that are painful and difficult. I now try to be aware of that at all times, and it helps me keep a brighter outlook.

2. There is absolutely no guarantee of good health or smooth sailing in life - suffering is part of life. Though I knew this before cancer, I somehow had a sense of expectation, maybe even entitlement, that my life would be healthy, happy, and fairly easy. I felt a blind invincibility that has now been shaken by a potentially fatal disease. But this realization actually brings me more peace and happiness than I had before. Reading Buddhist philosophy has helped me grasp this. Buddhist Monk Thich Nhat Hanh has written: "The greatest miracle is to be alive. We can put an end to our suffering just by realizing that our suffering is not worth suffering for! How many people kill themselves because of rage or despair? In that moment, they do not see the vast happiness that is available. Mindfulness puts an end to such a limited perspective. The Buddha faced his own suffering directly and discovered the path of liberation. Don’t run away from things that are unpleasant in order to embrace things that are pleasant. Put your hands in the earth. Face the difficulties and grow new happiness.”

3. I found that friends and family were the most powerful resource to help pull me through times of darkness. They helped fill the dark, scary spaces with love, light and encouragement. I have learned to value these connections above all else. So many people helped me carry my burden this past year, making it lighter and so much easier to endure.

4. Things can always be worse. Yes, I got an aggressive CANCER in my 50's and had to endure a year of difficult treatments, a life-altering surgery, and I lost most of my "trademark" red hair. But it could have been worse! I am fortunate to have good health and a strong body, a job with great health insurance, access to a wealth of great doctors and hospitals, and an amazing support network of friends and family. I know people go through tough cancer battles without the above, or with many more complications than I had. I feel fortunate.

5. The cancer I suffered does not have to be have pervasive nor permanent effects on my life. I can move on, get back to a productive work life, enjoy time with friends and family, travel, and many of the activities I love. Realizing that each day  our lives are full of joyful moments, even in dark times, has helped me be more open to experiencing them, and more happy overall.

6. Helping others has helped me put my own issues in perspective and to see that I am not alone in such struggles. I have been asked to be a mentor to a few friends across the globe who have been diagnosed with this rare cancer, and some who are dealing with the difficult decision to have APR surgery. I have tried to be helpful and positive with the people I have mentored, while also being honest about the difficulties. Sharing my experiences and thoughts with others in similarly difficult situations has helped me feel that maybe my experiences can help others have an easier go of it, and has helped me feel less alone.

7. I have discovered that humans, including myself, can be more resilient, both mentally and physically, than we might ever suspect. On Election Day last year, I went "under" for what was supposed to be a fairly simple excision of a small isolated tumor. When I woke up to my surgeon's grim face telling me they found that the cancer had spread both internally and externally (I had 2 cancers) I was devastated! For several days I walked around like a zombie, crying and cursing and "why-me-ing" a lot and thinking there was no way I could undergo the extensive and life-altering surgery and treatments that were now my only option. But, after much reading, meditating, and talking to others who helped me reason through all this, I was able to shift my thinking and move forward in a more positive way.
My thinking is quite different now. The other night I was driving a dangerous road, and a thought popped into my head: I could have a horrible accident and end up in the hospital. And then I thought - PSSSSHHHT! -I've already been through something worse than that, and I survived!

I certainly do not wish illness nor traumatic life-events on any of you! But this past year has shown me that "shit happens" to us all! I hope, should "shit happen" to any of you, that you can get through it in as positive a manner as possible. Please feel free to use me as a resource if I can be helpful in any way. You have all been SO helpful to me in so many ways. I never could have gotten through the past year without your support. I love you all. 😘

Healing

It feels SO great to be getting my life back!! I am back to work full-time and enjoying being productive again. Since I finished treatments, I have made up for time lost over the summer and have packed in some great active and adventurous fall weekends. The last weekend in September I felt well enough to hike in the White Mountains with pals from grad school. And in early October we explored the Sawatch Range and hot springs in the Rockies, then Colorado College parents weekend. And I am writing this as we prepare to head home after a week in Oregon. We had a blast attending a wedding in Crater Lake and exploring the Willamette Valley and Corvallis area with Marion. 

I am happy to report that, other than some peripheral neuropathy, my chemo and radiation symptoms are quickly dissipating. I am taking probiotics and vitamins to heal my body, exercising, and gaining a bit more endurance every day. I have had no bad intestinal pain for several weeks now. It feels SO GOOD to feel good again! 

I have been reflecting a lot on the challenges of the past year and the wild physical and emotional swings that I have experienced. I want to get some of my thoughts down here in the hope that they may be helpful to others who might have to face cancer, a life-threatening diagnosis, or other life traumas. I will do this in my next post. 

DONE!!!

As the chemicals from infusion #8 slowly leave my system, it is sinking in that I'm DONE with treatment!! Just in time - I developed involuntary gut-wrenching nausea just getting near the infusion room or looking at the little cups of cranberry juice they give me during treatments. Bllllleeeeeaaaaaaaacccchhhhh! Infusion #8 was the worst of them all - but - it is OVER!! 'Nuff said on that... time to move forward! 

So, now I am in the wait-and-see phase of treatment. People talk about this phase being emotionally difficult because you are no longer meeting with doctors every week, no longer actively "doing something" to fight your cancer. You are slowly recovering from treatments, waiting for the next scan, fingers crossed that no single cancer cell escaped the onslaught of your treatments. This period could be especially tough for me given the aggressiveness, treatment-resistance, and lack of information on my particular cancer. 

I don't want to waste any more precious moments worrying about cancer, I want to maximize my enjoyment of life! I plan to visit with a cancer counsellor in the upcoming months to get some good techniques to accomplish this. 

I also want to spend time reflecting on the past year. Dealing with a life-threatening cancer dramatically changes your perspective on many things. I now believe that the effect that many call "post-traumatic growth" is very real. I hope to make the most of the many lessons to be learned from the past year. I will write more on this as the thoughts become clearer in my mind, but for now, know this: support from friends and family can fuel your mind and body to make it through even your worst nightmares. I can't thank you all enough for being by my side throughout the last year, pulling me through. Your love has made all the difference. ❤️

The first day of the rest of her life (Jane finished her treatments)

Jane had the pump removed for the final time (hopefully).  Treatments are over!!!  This treatment hit her hard and she is pretty low energy and nauseous.  Still stealing off for anniversary celebration in Quebec.

Jane will update soon.

Thank you all for caring, loving, and keeping Jane in your thoughts.

Hooked up to LAST infusion!

Early AM steroid-induced blogging again - but hopefully this is the last of such nights! Although my platelets have dropped further and I had to have some bleeding on my stoma checked, my oncologist allowed me to proceed with the last chemo infusions yesterday. When the surgeon who checked my stoma casually said "let's just postpone chemo for a while", I involuntarily screamed "NO"! Between my reaction, the ostomy nurse's opinion that the stoma was healing, and my oncologist's more laissez faire attitude, I was allowed to proceed. The chemo effects are pretty nasty this time. Lots of nausea, muscular cramping, tiredness...BUT I am so pleased that I'm going to have this pump removed (hopefully for the last time) this Friday! 

Cancer certainly runs you through the full gamut of human emotions. For the first 4 months after diagnosis I experienced acute anger, denial, confusion, self-pity and anguish. But as treatments started I came to realize that denial, self-pity and anguish were self-destructive, and I really needed to rally all my emotional resources for the task at hand. I gradually came to resignation, and then finally acceptance. 

Recently, I reflected to Steve (who suffered through many bouts of my crying and "why me-ing" in the first 4 months) that it had been months since I had cried. Well, yesterday after the nurses installed the home-chemo pump for the last time and toasted with tiny cups of ginger-ale, the floodgates opened again. As I walked out the door at Lahey, I realized that the tears really hurt, both as they passed through my inner tear ducts and as they wet my face. When I realized that the chemo in my body was likely coming out in my burning tears, I stifled the emotion and washed my face. I will need to save the indulgence of tears for a future date. I am sure many opportunities will arrive in upcoming months as I adjust, recover from, and reflect upon this year. 

Have a wonderful week everyone! Looks like we're in for a stretch of lovely weather and a delightful late-summer weekend. 🌟Please enjoy every moment, dear friends and family!!

Slight complication?

I am up at 2 AM the night before my (hopefully) last chemo treatment, worrying. Yesterday I discovered a bleeding/scabbing issue with my stoma. The doctors think it might be related to chemo, perhaps low platelets. I was asked to come in early Wednes to be checked, stoma as well as blood. SO....back to possible delay in finishing treatment, we'll see. UGH - just want to be DONE so I can start healing.

I'll post when I have more info. Thanks for hanging in there with me!

Platelets rebound!

Just heard from my oncologist. Blood test results they took yesterday were actually a bit higher, so I am back on schedule to finish up my last infusions August 23-25. Never thought I’d be happy to hear I have an infusion - but YAY! Must have been those healthy blueberries that I ate this weekend in Vermont. And all the good juju y'all sent me, of course!

Platelets

My Fitbit is angry and is letting me know. It does not like infusion days as they lead to unhealthy long periods of sitting. My stomach and extremities are angry too, as infusion days lead to nausea, cold intolerance, cramping and pain. But I am not angry - this is infusion #7 - the second to last! What a long strange trip it has been.

One glitch this week. My platelets are in the danger zone. I will need to go in next week to have another blood draw, and they may postpone treatment #8 if they continue to drop. Platelets allow the blood to clot, so they worry about uncontrolled bleeding should platelets drop too low. I reminded Steve to drive carefully on the way home from the hospital today - no bloody car accidents please- he listened!

I have been asked to be a volunteer to talk with others who have my cancer, and have my 3rd volunteer call tonight. The most interest seems to be from people whose cancer has advanced to the point where they have been recommended APR surgery. Talking with people about APR surgery is difficult for me as I still feel ambivalent myself. It is still a bit early for me to be a good counselor I think, my feelings have not settled. Living with a colostomy is a big, disruptive life change, no question about it. It is forever - even after the more immediate pains and concerns with treatments have subsided, the colostomy remains.

On the other hand, I know of people who have refused the dreaded APR surgery who have died when the cancer spread. I know my APR probably saved my life. So, although the feelings are mixed, I try to be both positive and honest with my counselees. In time, I think I will get this all clearer in my head.

I'll post later once I get blood test results next week. Hoping I can proceed forward and finish up all the treatments by the end of August. I am already planning a kickass fall!

Love y'all!! 💕💕💕💕💕

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!

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 💕💕💕💕💕!!!!!

Slow and Steady Healing - the long and winding road

Today marks two weeks since Jane came home from the hospital, and almost 3 weeks since her surgery. Progress has been slow and steady. Though Jane won't be able to sit for about 6 weeks, she is able to putter about the house and recline with her books, podcasts, and small projects. She now has all her incision drains out and the stitches in the inner thighs removed. With this new freedom she is able to move around a bit more every day. At this point she's averaging a mile a day of walking - and by next week perhaps 2 miles/day! Walking is the only PT doctors will allow at this point, and spring arrived in Massachusetts just in time!

This week we have been trying to decide which is the best option for Jane's (phase 3) chemo treatments moving forward. We will go to Beth Israel on Thursday to get a second opinion and will make a decision soon. The doctors want to start chemo as soon as Jane is sufficiently healed, perhaps as early as early May.

Jane has enjoyed many visits from friends and family and is slowly transitioning back to a more regular (less boring) diet. THANK YOU, thank you everyone who has visited, sent cards, flowers, good wishes, meals and encouragement! Your support makes this ordeal so much easier to manage!

Clean Margins !

Hello Friends! 

Some of you have asked about bringing a meal. Anyone who would like to bring Jane a “Monday Meal” (i.e., something for dinner) is invited to do so by signing up via the Lotsa Helping Hands calendar.

Because Jane’s diet will be changing over the coming weeks — moving from the current “low-residue” options to her normal “bunny” diet (aka, lots of fresh fruits and veggies, and no white sugar) — she asks that if you sign up to do a Monday Meal, you please give her or Steve a quick call to see what works for her in that given week.

Thank you so much. Below is a good news note from Jane - 

 -------------

HORRAY!

I received excellent biopsy results today - all tissue excised during the APR surgery had clean margins all around!

This probably won't change the course of treatment from here, because cancer is a microscopic disease, the oncologists say that a few months of infusion chemo would be a good measure of prevention. But the clean margins certainly give us more confidence that the preceding radiation, the APR surgery, and following infusion treatments will be all worth it!

We saw the plastic surgeon today and he removed two drains, so I am less encumbered and feeling freer to move around, albeit slowly. My day is brightened with hope, my home brightened by your lovely cards, flowers, and smiles. Thank you, thank you, thank you!  

Home Sweet Home

Hello Dear Friends! We have put up info on visiting on Jane's Helping Hands website. Later this will be the place that we put up any needs we might have for meals. If you would like to join you can go to Helping Hands to sign up. Following is a note from Jane: 

So happy to be home! Six nights of hospital pain, confinement, meds, shots, and wake-ups was enough for a lifetime. Although I had to come home with three of the snakes still attached, I am able to move about much more freely. Today I was able to venture into the backyard to feel the bright spring sun. 

THANK YOU ALL for holding me in the light throughout this past week, I really felt and feel your love! It is helping me deal with every single minute of this ordeal. 

Tomorrow I go to see the plastic surgeon and hopefully have my drains removed. Pathology results will be later this week I hope. I am predicting a report back that says: "all clean margins". 

The day has come. Jane will be sprung

The doctor's have agreed that Jane can come home TODAY!  We will be putting up info on visiting soon on the helping hands website.  If you have not joined/signed up, please do today! You can go to Helping Hands to sign up.

Finally, pathology reports will come back later this week and we will be sure to share the news as soon as we have it.

With tears in my eyes, I want to thank all of you that love Jane so dearly.  We could not have done this without all that you have given us.

Steve

Thursday morning at Lahey

Posting from my hospital bed - starting to come out of my pain-killer haze. Feel a bit like I'm wrapped up in a bed of snakes -four drains from my thighs, abdomen and bum, and a catheter. Tried to walk last night but nausea got the better of me. Will try again this morning without the dilautid (opioid) which I think is making me feel dizzy and nauseous. Also planned for today: getting to know my stoma, and if I'm lucky - a piece of toast.
Thank you all for the encouragement and good juju – it really is helping to pull me through!

Let the Healing Begin!

The operation went well.  Both docs, colorectal surgeon (Francone)  and plastic surgeon (Vernadakis) reported that everything went well with no problems.  Francone saw no signs of previous cancer and suggested that the difficult rounds of chemorad did their job.  Pathology, completed in a week or so, will let us know for sure.

Jane is settled in her room (7E11) at Lahey Burlington.  She came up from recovery drowsy and is sleeping comfortably.  Her room has a nice view looking west over route 128.  While she cannot get up from bed for two days,when she gets up she will appreciate the view.  

I successfully distracted myself with HBO shows while Jane was in surgery and have a nice recliner chair in the room so I should be comfortable too.  I feel lots of relief that she came through this procedure so well.  Now we start the long path of healing.  I'm game and I know that Jane will be too.

Thank all of you that wrote, texted, emailed, and prayed.  We both appreciate all of the good wishes and thoughts.  

Love, Stephen

Updates and Helping Hands

I want to let you all -- those who are thinking of and supporting Jane -- know that I will use the blog to update you with her successful surgery and recovery. Please feel free to contact me (stephen.lowe@paragon-c.com or 978.263.9725) if you need, but I hope to use this blog as my main form of communication.

To coordinate visits with Jane and meals for our family, I have set up an account with Lotsa Helping Hands, and some time soon, I'll be posting the needs we've identified. If you would like to get announcements and participate (e.g., see times for visiting or when much-appreciated meals would be useful), please register at https://my.lotsahelpinghands.com/community/jane-c.

Thank you.

Steve

Supporting Jane / Next Steps

Hi everyone,

Debra (Jane’s friend) here in Acton.  

Our lovely and loving Jane is readying herself for the next big step in her treatment.

Next Tuesday (April 4) she’ll be having a significant surgery, and I know we all want her to know how incredibly held and buoyed and rooted for she will be!

So here’s the task: beginning at 7am and continuing through the afternoon, will each of you send "good vibes” (as Jane calls them) to her? 

Perhaps other phrases speak to you: holding her in the light; surrounding her with love; keeping her in prayer; lifting her up to gods/God/higher powers. Or Sending Good Vibes! Whatever your flavor, please deluge Jane all day on Tuesday. Let’s be so amazing that she can’t help but know this, and feel this, from all of us. Thank you. 💜

With gratitude,

Debra Simes

Belly Blues

Jane's belly on 3/27/17 - Planned stoma site.

Lots of appointments today! First meeting with Dr. Francone (colorectal surgeon), then with Ostomy nurse, then 2 pre-op appointments/blood tests, then meeting with anaesthesiologist. UGH. Reality is setting in about this major event next Tuesday that will permanently change my body and life. I had Steve take a picture of my belly after they marked it for the ostomy site. It will never look the same again. My digestive system will never work the same again. After next Tuesday, I will have an "appliance" forever attached to my body. Still in a bit of disbelief that this is all happening to me. 

A day in the Portuguese sun

Today was a sun, scenery and delicious memory-filled day hiking on Rota Vicentino. It felt so wonderful to hike the beautiful cliffside trail high above the deep blue waves, feel the cool winds off the Atlantic, and explore the gorgeous beaches and little fishing villages with my loves! This day was totally magical. It will provide me with images and memories to last throughout my upcoming months of recovery. 

Xox, jane

Like mama said, our Portugal trip has entered a new dimension of coolness these past few days on the ocean. Away from the beautiful but busy Lisbon streets we have been able to spend more time with each other, get plenty of steps counted on our fitness apps, and enjoy beautiful seafood in even more beautiful scenery. All three of us have felt like this is one of the more incredible regions we have ever been to. Empty of people - tourists or locals, the Rota skirts steep cliffs and offers incredible views of the rugged coastline and the big blue Atlantic. I am glad to be spending time with mom and dad in this incredible place. -Rory

In Portugal, in the Alentejo, Spring is here! Everywhere there are flowers, from bushes, herbs, and trees. I love the many different kinds of plants. Oh, and then there's the ocean and the wind. Our first glimpse of the wide blue coast took my breath away! Large rolling waves crashed into the rocky shore way down below with winds blowing at 30-40 miles an hour.  This is a beautiful place to create memories of travel with loved ones, food, the pristine environment, and the joy of life!  - besos, steve

Tears

I had my pre-op meeting with the plastic surgeon who will 'close me up' at the end of APR surgery next month. I was shocked to hear that he plans to remove my pelvic floor muscles and take my gracilis muscles (from both inner thighs) to replace them. Up until this point no one has mentioned removing/moving muscles, so I am in shock. There will be a long scar down the inside of each thigh, in addition to the other (less visible) scars that I was anticipating. In addition he painted a picture of a much longer recovery and enumerated scary complications that had not been explained to me before. I don't know why I am getting different stories from my different doctors. I did check out the things the plastic surgeon told me with my cancer support group, and they confirmed the lengthy recovery and myriad of possible complications.

The plastic surgeon said to plan on three months off work to recover. I already told work I would take 6 weeks off, which is what my colo-rectal surgeon had told me. Im scared! Will I be able to return to a healthy, productive, and active life? This surgery is a much bigger deal than I anticipted! Trying to take it all in but the tears keep coming this evening. I WANT MY NORMAL LIFE BACK!!!

Finally - Surgery Date (April 4)

Hello Friends -

Here is my promised happy post! 24 days out of chemo-radiation today and I was able to dress for work without padding myself with burn cream and bandages. I am starting to feel pretty normal again and able to move about much more comfortably. Horray! This past weekend Steve and I celebrated our birthday by venturing out on a cross-country ski at Windblown. I was able to ski 5 miles and it felt wonderful! Also, my intestines seem to be recovering and I am thrilled to be able to eat fruits and vegetables again.

This Friday I will have a re-biopsy of the new lump found in the area of my Paget's disease. The first biopsy (done by a NP) may not have been sufficiently deep to adequately rule out Paget's so an experienced doctor will do this one. We are keeping our fingers and toes crossed that it is NOT Paget's and we can proceed with the treatment plans as is.

Speaking of treatment plans - my surgery date has been set for April 4. We are busy talking with doctors, plastic surgeons (for skin grafts), ostomy nurses, and a few folks who have been through this surgery before and can help us plan for post-surgery, setting up the house, and recovery. I am also working to get myself mentally prepared for both the surgery and aftermath. Although I am mourning the upcoming loss of important functional body parts - I know that this surgery is the path to getting rid of these nasty cancers and long-term survival!

I am told that I will be in the hospital for 7-10 days post surgery, then will have 6 weeks of medical leave where I will be somewhat confined while I adjust to my "internal remodel" and life as a "bag lady". Steve will be setting up a post-surgery visit schedule via this blog and I will welcome your smiling faces to help cheer me up!

Thank you everyone for the continued support. I really couldn't do this without you all!

 

Phase I Complete !

Hello beloved friends and family,

Well today I am 5 days post-treatment (phase I: chemo-rad complete!) and am taking my first full sick day due to painful blisters, of all things. As predicted, the worst effects of the radiation have shown up the week after treatments. The good news is I am done with this phase and should start healing soon!

Assuming all goes as planned, we probably won't be posting much the next month or so as I heal and prepare for surgery. Looks like surgery will be in early April and I will recover for at least a week in the hospital, then my surgeon wants me to plan to be off work for 6 weeks. We will plan to keep people updated on surgery dates and progress via this blog as many of you have said that you find it useful.

EVERYONE - I am SO thankful to you for helping us through the past 4 loooooonnnng months! The support everyone gave us, including encouraging notes, messages, calls, delicious meals, Tony walks, foot massages, lotions, music, flowers, treats - it was just so incredibly uplifting and really helped power me along! One thing about getting very sick is it really helps you feel the love! The love for LIFE, living, and the people around you. That means YOU ALL!

And I am so thankful for the wonderful STEVE, who has been the best cancer-caregiver a girl could possibly wish for!

Thanks for checking in folks and for everything! You should see a happy post in a week or so about my speedy healing!

World Cancer Day

Congratulation on finishing this phase of your treatment Mom. You are strong and healthy and you can do this. I love you so much. 

Six Days to Go

Jane is on day 24 of the 30 day treatment plan for chemo/radiation.  If all goes well (no snow days or other unexpected issues) the last day is Thursday, February 2.

As predicted, as Jane approaches the end of treatment she is very uncomfortable with radiation burn and her intestines are impacted by exposure to radiation (enteritis). With new dietary restrictions, due to enteritis, we have been getting more creative with simple soups.  Tonight we will enjoy a friend's homemade chicken soup with matzo balls and tomorrow I am taking a crack at making wonton soup with another friend's homemade beef broth.  

Up until now Jane has been reporting to duty at work daily. Because she is getting very uncomfortable, she has decided to work from as much as possible until treatment ends.  We expect that the severity of the symptoms will continue for one to two weeks after treatment ends.

While feeling under the weather, Jane is cheered up by your encouraging texts and posts on the blog.

Thank you all for your love and support of Jane.

Steve

A Dark Day in History

The darkness of this month of radiation and chemo is further darkened by the fact that today, we get a racist, classist, misogynistic, anti-environmental president. Although I can't make it to the Women's March - tonight after my radiation treatment I look forward to standing with many people of color here in Lowell in resistance to Trump's racist and mysogynistic policies. The nausea that I usually feel after treatments should fit the mood - it makes me sick to my stomach that Trump will be our president - responsible for the fate of our planet, our future generations, our healthcare, immigrants, and people of color.

Here's to our resistance! Here's to us all rising, like a phoenix from the ashes, from this dark day in history!

Sorry - I need to rant!!!

Every now and then the sentiments of how unfair this all is well up in me and I need to scream "This is NOT F#**#ing FAIR! I have lived my life to be as helpful to others and the world as I can be. I invested well over 3 years of my life becoming a lawyer so I could help others out of their environmental and immigration problems and no sooner do I get started than this cancer hits me. With all the time and energy this cancer is taking from me, today I had to give up the last of my law clients. I simply can't manage what I was managing before. This makes me terribly sad.

This weekend the effects of 3 weeks of pelvic radiation hit me like a truck. My intestines have been suddenly reduced to those of a three-month-old. My normal diet of fresh fruits and vegetables is out the window as I struggle to find ways to keep my nutrient and protein levels up without everything passing straight through me.

And, even more upsetting to me is what I am learning about the long-term effects of pelvic radiation. Besides many gory details which I won't go into, I am told that for the rest of my life the bones in my pelvis will be weakened and I have 3x greater chance of breaking a hip or pelvic bone if I fall during biking, skiing, running, hiking, etc...... all things I have loved all my life.

NOT F**ing FAIR!!!

RANT OVER.

Day 16...

Well, I made it to day 16,  so that means I'm halfway through my chemo rad treatments. Everyone tells me the second half of these treatments is much worse than the first half, so I'm planning on laying pretty low until early February and concentrating on making it through to the finish line. This (first phase) finish line anyway.

So far, my oncologists are pretty pleased with my progress. I'm still able to drag my burned ass out of bed in the morning and make it to work, and my cell counts even came up a bit this week!

Benign!

......that word is a source of much joy in my home this evening! Doctors think the new lumps may just be a reaction to the pelvic radiation. HUGE sigh of relief! ☺️☺️☺️☺️☺️☺️☺️☺️☺️☺️☺️

Thank you to those of you who cheered me on, prayed for a benign biopsy, and hung by my side!!

Love you❤️❤️❤️ !!!

No Results Yet . . .

We are still waiting on the results of the biopsy.

Some of you have said that you are having difficulty posting to the blog comments section.  You should be able to post to the blog under comments if you first log into your Gmail account.

We will update the blog when we have more news.

Thank you all all that wrote wishing Jane well.

Is January a really dark, long month or is it just me?

Thank you all for your support. It helps SO much as I slog through treatments! 

I made it through the week, with a painfully burned butt and a new potential issue. I found some small lumps near the area where I have Paget's and had them biopsied yesterday. I am desperately hoping that they are benign! All my treatments are based on the belief that we are targetting ALL the cancer. A new cancer would throw a total wrench into things. I am trying my best to stay calm until the biopsy results come in on Monday. 

The good news is that I seem to have adjusted to the (chemo) Xeloda. No blisters in mouth, hands or feet, and no more horrible heartburn. I am hoping the next 3.5 weeks follow suit. 

I am really looking forward to visits and walks with friends this weekend and to enjoying the delicious-looking Jewish chicken soup that David made me yesterday.

Thank you everyone for checking in and offering food, visits, insights, and good humor. It is a long dark month but each one of you helps to make it that much brighter!

xoxo!  

2017 - out with the old - chopped off hair!

Here it is 2017! I look forward to the upcoming year with a mix of utter trepidation and high optimism. I know what lays ahead will test me personally in a way I have never been tested before. I also know that I head into the year with a strong body and mind, great doctors, and an amazing family and community of support!

This past Friday was day 7 of chemorad treatments and the day that taught me that I am going to need to adjust my life a bit. Friday I was up at 6, took my xeloda, rushed off for early meeting at work, left at 10 am for radiation at Lowell General, then back to work, then to the gym at work for a little exercise. By the time I got home my nose was running and head aching. It was all I could do to crawl up to bed. My WBC count had dropped substantially this week, so I guess I picked up a cold from somewhere and need to be more cautious about germs and over-doing.

Saturday was a day off treatment and my energy started flowing back. Rory and I went for a walk, lunch, and he took me to get my hair chopped off. I figure it will be thinning soon, so I executed a pre-emptive cancer-do! No more muss, fuss, or chemicals (enough chemicals in my life, thank you)! Actually got hair compliments at a party last night - who knew?

Happy 2017 to you all! 🍾 May it be a year of health and happiness and good new-ness!