Sara has finished 3 out of the 5 planned chemo sessions, and although this achievement is great progress, it means that the going is going to get a bit tougher for a little while longer. This is due to several factors: the first 2 chemo sessions were at 50% strength compared to the last chemo treatment before her liver surgery in late January, plus the (unfortunate) cumulative effect of the chemo cocktail which she is receiving. Plus the fact that her system is still recovering from major surgery!

In a way, however, dealing with the chemo side effects has been easier this time around since the unknown aspect of the treatment has largely been removed. Sara knows the cycle now; she knows which days she will feel better and which days she’ll feel worse, which now-familiar faces of the nurses will be present at the different treatment locations, etc. This knowledge isn’t 100% accurate of course, and sometimes just knowing the cycle doesn’t help when you’re feeling the nausea/neuropathy/cold/fatigue/insomnia/mouth sores/face rash/[fill in misc. symptom here!].

I have noticed that Sara has been tougher though this time about just pushing through the various symptoms and getting out and about, even if it is just to take a walk down her long country driveway on a cold but sunny day (apparently even moderate exercise is helpful as it helps the chemo to move throughout the body). Sometimes she even feels up to riding Brady (her son’s pony), visiting Star, attending a function at her elementary school, or doing some errands. She has also been more disciplined about eating and lost less weight compared to the previous chemo regimen. These efforts all require a great amount of energy – Sara has described the feeling of “cancer fatigue” as one of a deep and hollow exhaustion which isn’t relieved by sleep, compared to pre-cancer feelings of being tired.

Our brother Lars was able to come from NYC to help out for the week of Sara’s 3rd chemo session (March 28), which was a very nice treat for Sara since his visit also spanned Easter. Chemo #3 was also the first one at 80% strength, so it was reassuring for Sara that she would have some extra help during the first week (the most difficult period).

Just a reminder that help with occasional meals is always appreciated – I just checked the Meal Train link and it worked for me, though we’ve heard some feedback that sometimes the site isn’t loading. You can always contact Sara re: FB message or e-mail if you can help out. Keep sending good thoughts Sara’s way as she completes chemo 4 next week and chemo 5 on April 25!

Just to catch up, Sara’s last chemo treatment was December 21, 2015 and the liver mets surgery took place on January 25. After about 1 month of recovery, Sara started back up with chemo on February 29. As she is still recovering from the surgery, the dose of chemo was 50% of the previous level for this first (of probably 5) rounds. Still it was a bit challenging for Sara to go back to the routine of chemo on Monday, including wearing a pump for 48 hours of additional infusion, knowing that by Wednesday she would probably be feeling some of the worst side effects (nausea, cold sensitivity, rash from Eributex, etc). She also now has a long incision to deal with across her body, which makes it more challenging to manage the pump and its associated tubing.

Sara made the most of the few weeks before chemo, including visiting the elementary school where she is a teacher (Black Diamond Elementary), keeping up on horse-related activities with Rylan, spending time with her foal Star, and cooking and freezing meals to prepare for potential days where she is feeling to sick to cook. Speaking of cooking, Sara has had some feedback that sometimes the Meal Train link isn’t working. If you can help with meals this week (which would be great since treatment number 2 starts tomorrow), you can e-mail her at sgelfan@aol.com if you can’t get to the MealTrain website. 

A great idea that Sara had to motivate her recovery program was to think of the main steps the same way that she would study a jump course – so she decided to put it into a visual form, as seen in the photo below:

I like visual aids so I thought this was a great idea for her to put it up somewhere she can see it often and being able to “see” her specific goals. Here is a cropped part of Sara’s class picture for this year – so great that she was able to be part of it!

Sorry if the kids look creepy – was just to respect their privacy! So Sara goes back to chemo tomorrow; please continue to send all the help and zen her way, it is very much appreciated!

Sara has been home since the evening of February 3, and has been recovering slowly but surely. As can be inferred by the blog title, she is now staple-free, as of last Thursday. The surgeon removed them himself, and according to Sara it wasn’t as scary (or painful) as had been anticipated! The staples were starting to get a bit itchy so she is more comfortable now without them. If you weren’t brave enough to look at her surgery picture, basically she has a scar which runs across the front of her ribs/diaphragm area, almost completely across her body. It looks like it is healing very well, to me anyway, and hopefully will just fade to a thin line.

The initial days at home were definitely a bit rough – a lot of pain, which makes riding in the car to appointments a challenge, forcing tackling the flight of stairs in her house very carefully and slowly, or turning just a seemingly simple task of getting up from a laying down position into a complicated chore. On February 8 Sara went to see her oncologist, who was very happy with the surgery and the report back from the surgeon. Even though Sara is still having some pain and nausea, the doctor said that Sara has already “broken all of the odds” right now, by doing as well as she is (yay!). The chemo regimen and planned surgeries may seem very aggressive, but her medical team wouldn’t have approved this approach if they didn’t think she could handle it, especially being young and in good health. The absolute goal is not just to live with the cancer, but to cure it 🙂 🙂 .

So as you can probably imagine, Sara is keeping her fighting spirit in mind as the start date for resuming chemo approaches rapidly – February 29. The plan is that she will go back to her former schedule of treatment of alternating Mondays. In the meantime, Sara is now completely weaned off of the pain medication, and is working on regaining some strength and weight lost post-surgery. Unfortunately nausea seems to be a persistent side effect, probably related to the surgery according to her doctor, but hopefully this will pass before the chemo treatment resumes.

Sara is motivated to keep on moving through the pain/nausea, so after a few days at home she was determined to get out of the house into some fresh air, and walk next door to visit Brady (her son’s pony). Horse therapy is great therapy, as you can see in the picture below! One other reminder – for those who are (or want to) participating in the MealTrain program, it would be most helpful for Sara to receive some deliveries during the weeks that she has chemo (i.e. starting February 29, then March 14, March 28, etc). Thanks to everyone for your support!

Meeting Willow, the sweet therapy dog

 

Sara told me today that she might be released from the hospital as early as tonight – yippee! If not tonight, then probably tomorrow. Since the last update, no complications have occurred, but it took a few extra days to get the pain management under control. Even though she tries to maintain a good attitude, we have to remember that she has had a major surgery – through muscles, tissue, and not to mention her liver – she has 23 staples across her diaphragm area! Anyway she was gradually weaned off of the morphine button and the epidural over several days. Which is a good sign, but then she really started to feel the true depth of the surgery-related pain. I’m sure that all of the walking and moving around Sara did the first few post-surgery days helped her body to recover, but with the added factor of increased pain, it was all a bit frustrating. For a little while it almost seemed to Sara like her recovery was backtracking, instead of progressing. But now it is slowly improving.

As you may have seen via her Facebook posts, Sara is still pushing ahead, despite the pain; it’s just that the same tasks take more effort now. She had a very nice visit from a therapy dog, as you can see in the pictures, and is also working on Valentines cards for her class (!). So she is not just laying in bed and resting on her laurels, so to speak :). No that we would expect that of her anyway.

Although Sara may not be up to many visits in her first days back at home, she does appreciate texts from friends to check in on her during the day, especially the periods she is on her own, i.e. the middle of the day when the kids are at school and Eric is at work. When she is up to visits in person, she will be sure to let us know!

So this quote is attributed to Vince Lombardi, but I thought it was fitting for Sara’s situation. Except that she hasn’t literally fallen down, don’t worry! There isn’t too much to update, but “boring” is a good update too 🙂 .

Sara’s recovery has continued to progress, slowly but surely. She is now able to do several laps around her floor, without holding on to anything for assistance (her IV pole is with her just in case). She is also spending more time sitting up in the chair in her room. Other signs of progress – the arterial IV in her neck has been removed (ick!) and her epidural is scheduled to be removed tomorrow. Her main complaint concerns the blood thinner shots that she has to receive twice a day, apparently the medicine itself stings a lot when it is applied. Yes, it is better than developing a blood clot, but still not very pleasant. Oh and she isn’t too thrilled about the hospital food, but then this seems to be a universal issue! She had to start on a very bland and mushy diet as well and is finally able to start eating a few more “regular” foods.

As to the $64,000 question – when is her release date – we don’t know yet. Hopefully it will be within a few days, but she still has to meet her doctor’s list of criteria first. As soon as she knows the date, I will update the information here. Thanks again for all of your support!

I heard from Sara early this morning (5:30 am West Coast time) – she said that the nurses wake her every 2 hours or so to check her vital signs and do other tasks. Her voice is a bit hoarse from having a breathing tube during the operation, but otherwise she seemed to be in very good form. It appears that her pain management is being controlled much better this time around, compared to the emergency blockage/colostomy surgery she underwent in October 2015. One factor is the epidural she received – similar to the type women can get during labor – but she is only numb in the stomach area, not her legs.

Despite having many lines and tubes attached (including an IV in her neck – Sara said it sounds worse than it is – yikes!), Sara was encouraged by the doctors to start walking already around her hospital wing, several times a day, and to start sitting up in a chair for short periods of time. In the attached pictures she sent me she is using a walker, but later in the day she was able to walk around a bit just holding Eric’s hand. Just in case you were curious, her incisions are closed by staples :).

        

Taking her first lap around                  Room with a view

 

 

 

6:30 am (East Coast time)
I just talked to Sara; she is in good spirits and she and Eric are on their way to the hospital. Eric’s mom will be there too. I will update the blog as soon as I hear *anything*, so please be patient with me.

2:45 pm (East Coast time)
Just talked to Jan, Sara’s mother-in-law – GREAT NEWS!! The surgeon removed 4 tumors and otherwise everything looks fine inside. Sara is in the recovery unit now and they will be able to visit her in a couple of hours. Thanks so much for all of your thoughts directed her way, I’m sure they helped!!

6:00 pm (East Coast time)
Jan reports that Sara is in a regular hospital room now, and has already shown her smile in defiance to her hospital confinement!

6:00 pm (East Coast time)
Eric wanted to make sure that I passed on a special “thank-you” message from him to express his gratitude to everyone for their support and help. He wishes that he could have been able to text every person who has helped along this journey, but for now a blanket appreciation will have to do. Although Sara has been a strong fighter throughout her ordeal, today’s surgery is a very positive step towards Sara’s recovery to health, and everyone has had a part in getting her here.

Great news regarding Sara’s PET scan – she is cleared for surgery on Monday! The news is scary and exciting at the same time, but at least it is a forward action. Today she had a pre-op appointment, had some blood taken and basically is getting ready. She has been taking advantage of the break from chemo by cooking and freezing some meals, spending quality time with the horses and kids, etc.

A few public service announcements:  the plan is that Eric will be in touch with me on Monday to relay the latest information on the surgery and Sara’s progress, and I will then update the blog right away. This way we can have one central source of information. They will have an early start – arrival at the hospital at 5:15 am and surgery is scheduled for 7:15 am.
The other announcement has to do with the Mealtrain schedule – as Sara has been prepping for the week that she will be in the hospital, she won’t need any meals delivered during this time period. If the schedule can start back up again on February 1, that would be great! Thank you to everyone who has been participating in the Mealtrain program, it has really been a big help.

Any updates will be posted as they come in! Please pray, think healing thoughts, meditate – whatever works for you – for Sara on Monday morning.

Sara and Rylan at the regional riding awards – Rylan cleaned up! But the best part was that Sara was able to go, when a few short months ago she thought she would be too sick to make it.

Sara’s surgery date has now been scheduled for January 25. It turns out that the surgeon, who is a liver surgery specialist, will only move forward with the surgery if Sara doesn’t have cancer anywhere else in her body (aside from the colon cancer). This means that if even 1 lymph node is found to be cancerous, the surgery is off for the time being. If this is the case, Sara would then resume chemo treatment and then undergo more tests (CT scan, PET scan, etc). As you can imagine, this is a very high bar to pass so Sara is anxious to find out the results.

A PET (positron emission tomography) scan was scheduled and took place yesterday. PET scans use a radioactive solution to look for signs of cancer in the body (so yes, for a little while Sara might be slightly radioactive – ha!). Sara reported that it went fine, just made for a long day of preparatory procedures, fasting, the IV placement, the scan itself, etc. The results of the PET scan will be ready on Monday, January 18 so please think good thoughts for her in the meantime!

Sara also did learn a bit more about the liver surgery itself – the plan is that a portion of the right lobe of the liver would be removed, which is called a “non-anatomical wedge resection”. She will probably be in the hospital for about one week, and then the recovery period at home is estimated to be 4 – 6 weeks. In some cases (not many though), the surgery can be done laparoscopically. In Sara’s case, this is not possible, and the surgeon informed her that she will have a scar across the front of her body, just under her diaphragm. So as you can imagine, this is a pretty major surgery. Sara is eager to move ahead though and is ready to be tough (remember, horse people are tough!)

Sara also had genetic testing done for known markers of colon cancer mutations, such as Lynch syndrome, familial adenomatous polyposis (FAP), Apparently up to 25% of colon cancer cases have a family history of colorectal cancer (CRC), though known mutations only include 5% of this group. The remaining 20% may have other contributing factors, such as undiscovered mutations or other unidentified genetic backgrounds. Even though the risk of a genetic form of CRC is not that high, it is obviously better to rule it out sooner than later, for Sara’s children’s’ sakes and that of other family members.

 

Sara met with her oncologist today and the verdict was “go for surgery!”. More details to come in the near future, but for the moment the plan is that she will have surgery on the right lobe of the liver in 2 weeks (!). It may sound strange to be “happy” about surgery, but in this case it is definitely a good sign. Way back when Sara was first diagnosed (ok not so far back, but it already feels like a long time) it didn’t even look like surgery on the liver mets would even be a possibility. Sara was very glad to prove the stats wrong 🙂 .

According to existing literature, a large share of the liver mets reduction can be attributed to a relatively new chemo drug she is taking, Erbitux. This drug has been found to be extremely effective in shrinking colon cancer mets to the liver, when administered in conjunction with other more standard CRC treatments (such as 5FU and Oxaliplatin). Unfortunately Erbitux is also responsible for giving her a painful rash on her face and body – kind of like having teenage acne all over again – but in view of the great response rates I think that she feels it is worth it.

So back to the surgery – there are different types of liver surgery, called a “resection” in the case of operating on liver mets. A surprisingly large amount of the liver can be hacked off, as long as there is a decent amount of healthy liver left behind. I came across some examples of good recovery rates after removal of even 80% of the liver! As you may remember from high school biology class, the liver does actually regenerate itself, and remarkably fast – 6 to 8 weeks, depending on the amount which was removed. For surgery purposes, the liver is divided into 8 “segments”, and the right lobe contains segments 5 – 8. We don’t know yet if just a few segments will be removed, or if all of the right lobe will be removed (in this case it is considered to be a “lobectomy”).

Despite the somewhat giddy tone of this update, liver surgery is a serious procedure. There are many blood vessels, veins, etc flowing through and around the liver. Recovery from a liver resection is often a bit of a long but generally smooth road, though complications can happen and everyone’s case is different. Sara will also need to have a PET (positron emission tomography) scan prior to the surgery, to make sure no little bits of undiscovered cancer are lurking. While we wait for more information, please keep Sara and her family in your thoughts!  

P.s. Just as a reassurance, I am using respected sources when I cite the information above, such as the efficacy of Erbitux and the odds of eligibility for liver resection, for example. But I am not going to turn this blog into a research paper with corresponding citations. If anyone is particularly interested in the sources, feel free to contact me directly and I’d be happy to provide the information.