Sara went into surgery around 4 pm East Coast time; she seemed in good spirits despite having several veins blown during the IV attempts…

I heard from Eric about 8 pm East Coast time with a good report: the surgery took a bit longer than initially expected, due to some excess tissue in the area but so far everything looks good (phew!). More updates to come!

I hope everyone had a very nice holiday season, and best wishes for 2017. Sara has recovered well from her big surgery in the fall, aside from a blockage scare right before Christmas (which was resolved quickly at the hospital, phew!). In fact lately she has been doing some “test runs” of half-day teaching at Black Diamond Elementary School (combination 1st – 2nd grades) as she was planning to return to work on a part-time basis in early 2017. When she is feeling well, she does her own Facebook updates, so that is why the blog has been quiet for the last couple of months.

However, following a clean MRI on December 9, Sara’s surgeon surprised her with the proposal of reversing the ileostomy. There was a condition, of course – that her previous surgeries had healed up with no leakages, including closing up the original colostomy. The procedure to check on the healing status is called a “double contrast gastrophy” – a scan of the colon is done after administering first barium, and then forced air, which took place on December 19. Unlike a colonoscopy, you are awake for this procedure! As usual Sara toughed it out and was rewarded with the good news that her previous surgeries had healed properly.

Tomorrow’s surgery will close up a hole for once, instead of adding a new one 🙂 . Sara’s ileostomy will be reversed and all of her internal plumbing will be connected again, after just over 1 year of living with two consecutive ostomies. Although the surgery is not as extensive as the fall operation, Sara is understandably a bit anxious about going under anesthesia again and the adjustment process her body will go through getting used to the “new” normal. Her chemo port has been acting up a bit lately so it will also be tested while she is in the hospital and may be removed (this would be a separate surgery). So she would definitely appreciate all of the good thoughts and zen you can send her way! She will probably be in the hospital for about 5 days. I will update the blog tomorrow morning as soon as I hear from Eric.

Once again, apologies for the late update. Sara came home from the hospital Monday night of last week, and since then the caretaking role became much more intense.

After almost 1 week in the hospital, Sara had gone through a sometimes painful and challenging process of being “weaned” off of a multitude of IV’s, tubes, and strong pain medications. While she was more than ready – mentally – to leave the hospital, it can also be scary to leave the secure environment of round-the-clock medical care. Luckily her health insurance company covers several visits from a home health nurse to check on her surgery sites, which is very comforting.

All in all, she has 4 separate surgery sites (reversal of the original colostomy, fixing a hernia in the original colostomy, creating a new type and location of an ostomy – an “ileostomy” – and maybe most important:  removal of the original colon tumor). This is a lot for the body to adjust to! Luckily she doesn’t have any staples this time (just stitches), as she did for the liver surgery earlier this year. She is encouraged to get up and walk around her bedroom a bit several times a day, but once you realize that you can’t access your abdominal muscles, just sitting up, getting out of bed, taking a shower, etc become painful and daunting tasks. She also has to keep track of her medicine schedule and other records for each 24 hour period (or for now, whomever is functioning as her caregiver takes care of this information).

Now that I have returned back to Maryland, Sara would be happy to have visitors, especially during the day when her kids are at school. So feel free to visit – just send Sara a text in advance to make sure that the visit is during a good time (don’t worry, if she is sleeping she will turn the volume off of her phone). Meal donations are also gratefully accepted, either through Meal Train or on an informal basis. Currently Sara is on a kind of clear, soft-foods diet (sounds exciting – not!). So soups are popular, such as chicken soup, or dishes such as macaroni & cheese, etc. The only caveat is that her diet is also gluten-free, so please keep that in mind. Alternatively, a meal for her husband and 2 boys is great too, as she currently is limited to one trip down the stairs per day, and is only able to be out of bed for short periods of time. She is getting stronger every day, though it is an uphill climb. I saw a big improvement just in the one week she was home from the hospital! But sometimes it is easy for Sara to get frustrated over the perceived slow progress. Baby steps, baby steps…

Sara has a surgery follow-up visit this Friday, where the drainage tube from the colon tumor surgery will be removed (ouch) and her chemo port will be flushed (double ouch). The results of the colon tumor tissue biopsy will also be discussed. So Friday will be a big day – please keep your fingers crossed for Sara!!

I’ve been having some technical difficulties accessing the Intranet, so I apologize for not being able to update the blog yesterday. Anyway here is the news, from what I understand from Eric who spent the day at the hospital yesterday:

The procedure was pretty long, about 4 hours for the actual surgery and then another hour or so to sew things up. So what was done – it seems that the colon tumor was already killed off by the radiation/chemo, and only some dead tissue was left (yay!). The remaining tissue was sent off to the lab to be analyzed. The colostomy was closed off so that the this part of the colon can “rest” and recover from the radiation, which left some scarring behind. A new ostomy was created, lower on the body, called an ileostomy which will take over the tasks of the colostomy for now. The eventual goal is that in the future the ileostomy will be reversed and her internal digestive systems reconnected, back to their normally functioning state. However this process will take some time, maybe 6 – 12 months.

The colostomy had recently developed a hernia, which the doctor was able to repair during the surgery. Sara will be happy about this, as the hernia was uncomfortable but initially the doctor didn’t think she would be able to fix it during the current surgery.

For some reason Sara didn’t get a room until towards the end of the day, so Eric said she was very tired and a bit “out of it” in the evening. Unlike the previous surgery in January (liver surgery), Sara didn’t get a spinal block this time so the painkillers were making her a bit woozy. Sara’s sister-in-law stayed with her last night and Eric went back to the hospital this morning. We should get more detailed information from the doctor today, as apparently the report was a bit rushed yesterday as she had other surgeries to attend to. So it may turn out that some of what I’ve written may be slightly amended later, but the main message is that everything is going well! In fact the doctors say that they can’t really explain the incredible turn-around Sara has had since her initial diagnosis about 1 year ago. I’m sure that a large part of her success is due to her fighting spirit and pro-active attitude regarding chemo, radiation and powering through all of the debilitating side effects. Another significant part is also due to the incredible support she has received from her family and friends, so here’s to sending out a collective “thanks!” to all of you :).

7:40 am – Sara went into surgery this morning. She seemed to be in good spirits. I will update the blog over the day as soon as I have new information!

 

Sara has had some follow-up appointments since the last blog update, but the most important bit of information is that the colon tumor surgery is still scheduled for Tuesday, September 20.

She had a colonoscopy last Friday, and it seems like the colon tumor has shrunk a lot, but the surgeon will still need to biopsy it and confirm whether there are any active cancer cells in the tumor. Sara was hoping that the colostomy might be able to be reversed, but it looks like an intermediate surgery for an ileostomy may take place first. It sounds a bit confusing, but the basic definition for an “ostomy” is :  “Ostomy surgery involves taking a portion of your digestive [or urinary] tract and redirecting it outside of the body.” However there are 4 different types of colostomies alone and any type of ostomy may be temporary or permanent. To complicate things further, the colostomy must have gotten lonely because it has also developed a hernia. Hernia surgery is kind of low on the priority list for now, but it will take place at some point. Basically, the doctor won’t know for sure until she gets inside Sara’s system, but obviously we are hoping for the best possible outcome! So next time you are complaining to yourself about this or that ailment, just remember everything Sara is powering through and trying to maintain a semblance of a normal life…

My 19 year old son and I will be arriving on Sunday. His contribution will be to keep two lively teen/pre-teen boys busy, distracted and active when they aren’t in school, while I help out on the home front and in the hospital (my son is only staying for 5 days since he has to get back to college). I plan to stay until October 3 and hopefully Sara’s recovery in the hospital won’t be as arduous as it was for the January liver surgery, because we have some fun planned for her younger son over the weekend of October 1. Yes, it involves horses 🙂 .

Disclaimer:  The cartoon character is not meant to resemble any specific person, living or otherwise. In fact I have no idea what Sara’s surgeon looks like, but I know the surgeon is female and this clip art rendition looked friendly and competent!

Sara’s blog has been quiet lately, but I’m kind of a “no news is good news” type of person. She has been feeling good since her chemo and radiation break started and has been updating on Facebook over the summer.

However she recently had a CT scan, an MRI, and a PET scan – all in preparation for September’s surgery – and as usual the news is good overall, but a bit confusing. So we’ll dive right in:  the CT scan and MRI took place on August 18. The results were a bit strange though; the doctor had trouble finding the tumors on the left side of the liver (the side that was expected to be removed via a lobectomy). Hmmm, I know what you are thinking, as I was thinking the same thing too, but didn’t “dare” voice it (as in, maybe the doctor can’t find the tumors because they are gone???). So, a radiologist was brought in for a second opinion the following Monday. Still nothing conclusive so a PET scan was scheduled for August 25. But of course there had to be a snag – Sara’s health insurance denied payment for the PET scan. Sara decided to take a chance and go forward with the PET scan anyway, even if appealing the insurance company’s decision fails and they have to pay for the PET scan out of their own pocket.

Moving along – the tumor board met today, and came up with two scenarios:  1) a single surgery to remove the colon tumor and possible reversal of the colostomy, while closely watching the liver with a CT scan every 2 months; or 2) sticking with the original plan to remove the left half of the liver anyway, just in case there is some cancer remaining which is not showing up on the scans, plus removal of the colon tumor and possible reversal of the colostomy. The tumor board was supportive of option 1, which Sara also preferred. Memories and side effects of the liver surgery she already had on the right side of the liver in January are still very acute, and she preferred to postpone any additional liver surgery until it is clearly needed. So surgery is scheduled for September 20! In the meantime she still has a few more appointments – a colonoscopy on September 9, which will provide more information regarding the possibility of reversing the colostomy. She will find out about the results on September 12.

Along the way, Sara has been dealing with the same tasks as many of us; finishing up summer vacation and getting the boys ready for the start of school (Rylan is starting middle school, yippee!) along with juggling medical appointments, treatments, and medication. She definitely wants to send out a collective “thank you” to everyone who has been helping her out with her appointments, meal deliveries, and thinking positive thoughts for her during this time. Please keep a bit on reserve for her surgery on September 20! I will be coming out from Maryland to help her family while Sara is in the hospital and will continue to update as new information is received.

Sara has now spent the last two months or so undergoing the combined treatment of chemotherapy and daily (M-F) radiation.

Since the last update, Sara’s doctors proposed a new treatment schedule. Instead of chemo every other week and daily radiation (M-F), the new chemo schedule was extended over more days but at a lower dose, with the goal of reducing the severity of side effects as the radiation alone can result in side effects of its own (extreme fatigue, digestive issues, etc). So Sara received her chemo infusion on Mondays and wore the pump all week long until it was removed on Fridays. She had the weekends off, and then the same cycle started again the following Monday. The daily radiation treatments last for about 30 minutes. According to her oncologist, the efficacy of chemo is increased by up to 50% when combined with radiation treatment, so that is another motivation for the combined treatment.

Sara has stayed tough and hung in there – tomorrow her chemo pump is removed and chemo is over – hopefully for good! The radiation treatment will continue for a few additional weeks. Then it is time for more scans and tests to see how she fared with the treatment and some time to rest and recover before the upcoming surgery.

This June was a big month for Rylan – “graduation” from elementary school, and Sara was able to be present – especially important as the elementary school where she has taught for many years (Black Diamond Elementary school) and where her children attended elementary school is going to be renovated over the next year, so this was the last look at the school which is such an important part of their life. Rylan also traveled to the East Coast to visit with Sara’s family friends and relatives, which was a great experience for him.

 

So it took a bit longer to update the blog than expected, but that is because Sara’s doctors have scrapped the old plan and proposed a new plan (yes, she will be making a new jump course poster 🙂 ). The MRI and CT scan results were so good, her oncologist proposed the idea of combining the liver lobectomy *and* colon tumor surgery into a single operation. But, to be sure, Sara had to wait another week for the tumor board to vote – they said yes!! So this changes the schedule around quite a bit. One of the reasons for combining the surgeries is that the fewer surgeries one has, the better. Shorter recovery time, less (cumulative) risk, etc. Since Sara has been so tough and responding so well to the aggressive chemo regimen, it was decided that she would be a good candidate.

So this sounds like great news, right?? Well mostly, but instead of getting the break from chemo that she was expecting prior to the liver lobectomy, chemo series #3 starts up again this coming Monday, for 5 weeks of treatment, every other week (10 weeks total). Sara will be on the same medications as previously, except for Erbitux as the “lovely” rash it caused would contradict the radiation treatment. Radiation starts on June 2, and goes 5 days per week (M – F), for 5 1/2 weeks. Having both chemo and radiation at the same time is going to be tough, but Sara can do it with one more final wave of support from her friends/relatives/community. The main challenge is that the daily radiation is going to take place in Puyallup, instead of Bonney Lake where she usually has one of her chemo treatments. So if you have been wondering how you can help, transport to the daily treatment(s) is going to be needed, at least until Sara knows how she is going to react to the new combination of treatments. One of the main side effects of radiation is fatigue, so when you add that to the already-existing chemo side effects, recovering from major surgery, and fighting cancer, it will all add up to one tired puppy person! Meals will also be needed during the intensive dual treatment period, so please check the Meal Train link often (or for some reason if it isn’t working, you can e-mail Sara). Don’t worry that you need to provide something fancy – her household is all guys and they aren’t picky…

Sara will be starting this scary but exciting phase of her treatment very soon. We know she can do it, but as the saying goes it takes a village, and for at least 5 weeks she will really need the support of her “village”. So when will the surgery take place, you may be wondering? Assuming that the chemo/radiation schedule goes according to plan, she will finish chemo at the end of July. She will then have about 2 months to recover physically from the aggressive treatment, and surgery would take place in October. The plans could change again, depending on developments, but this is the current plan.

Last note – I saw this story about what it is like to be chronically “sick”, for those who aren’t. Sara really liked it and asked that I put the link to the story on the blog:

“But you don’t look sick…”

It’s a quick but nice read, so please check it out.

I spent this past week with Sara and her family, as she completed session 5, the final session of this round of chemo. While completing this round of chemo is great news, I need to correct an earlier post where we thought this would be the end of any chemo treatment. It turns out that after the “big” operation (removal of the left side of Sara’s liver), the plan is for more chemo along with radiation. Sara was a bit disappointed at this news, but I’m sure she will take on the challenge as firmly as she has done so far.

Even though Sara told me that she felt just as sick this round, somehow she became much tougher; physically stronger and determined, as she put it, not to just watch life pass her by because she didn’t feel well. I’m not sure how she found the mental fortitude, but I guess no one knows how strong they are until they are faced with a seemingly insurmountable problem. Sara was amazing – she tired me out! Almost every day last week we did something physical – went for a hike with Brady the pony (sometimes she walked and I rode, or vice versa), went to visit Star after the pump removal, watched Rylan perform at his last elementary school talent show (and visited with her students and colleagues), worked in her yard decapitating dandelions, etc. This doesn’t mean that she never felt sick – she definitely had low moments:  feeling nauseous, weak limbs, irritation from the Erbitux rash – the list goes on. But she had plans for the day and she was determined to stick to it, no matter how long it took to get ready. I wondered sometimes if I could do the same; it seems like it would be easier to sit in my favorite chair and feel sorry for myself, and nobody would have judged me for it. So if anyone is going to continue to beat the odds and get through this successfully, Sara will do it!

So today was already a big day for Sara – she had an MRI and a CT scan. The results of the scans will determine when the “big” surgery will take place. So please keep your fingers crossed for good news!