OK I might be a little biased in this area, but I was very happy to hear from Sara that she was able to go to her son Rylan’s riding lesson this weekend, and got to see an old friend who was visiting from Oregon. They also were able to visit Sara’s horse Roxy and Roxy’s baby, Star, in Spanaway despite the 24 degree temps! While this sounds cold to anyone, it is extra cold to someone who has chemo-induced cold sensitivity and neuropathy.

Sara was able to plan ahead a bit for the visit on Sunday, by taking some anti-nausea medicine (Zofran) a bit more proactively than usual. She is really trying to get through the chemo treatments with a minimum of additional medications, but at the end of the day she will feel better and be stronger if she is able to eat. Usually she starts to feel better during her “off” week from chemo, so being able to go out this weekend is definitely a great start.

 

This Monday Sara started chemo round 3 – more than halfway through her first series of sessions, yay! Sometime shortly after her 5th chemo round, scheduled just before Christmas, Sara will have a CT scan which will help inform her oncologist as to whether the cancer is responding well enough to the current chemo regimen that a liver resection may be a possibility. It may be too soon to know for sure, but at least she should be able to tell if things are heading in the right direction.

Chemo round 3 was (and still is) tough on Sara, but it is hard to know if it is a cumulative effect as each round has had some differences. Two weeks ago Sara had the chemo agents 5-FU and Oxaliplatin administered on Monday (Oxaliplatin also continues delivery for 48 more hours via a pump) and a new drug, Erbitux, on Wednesday, which is also when the pump is removed. This time she received all three drugs on Monday, which is a pretty heavy dose of medications, including the Oxaliplatin via the pump.

The good news was that Sara had no serious side effects from the Erbitux (there is a small but serious risk of anaphylactic shock), but the Oxaliplatin (“Oxi” for short) causes most of the nausea, unfortunately, which worsened over the next two days. On Wednesday, during the pump removal, Sara had a sudden reaction where her hands locked up into a fist, and for a few moments she was not able to get them to unclench. Oxi also can cause jaw spasms, which Sara has also had, and is responsible for the extreme cold sensitivity in her hands/feet and mouth (i.e. can’t drink or eat anything colder than room temperature). All of these side effects are expected to disappear after the Oxi treatment is completed, but this is little comfort while one is suffering from them. The Erbitux also has caused a red, acne-like rash, which is a common side effect; Sara has prescriptions for antibiotics (pill and topical forms) to address it. Oh and I almost forgot that she still has to deal with the colostomy, on top of everything else!

Sara was able to visit with her in-laws on Thanksgiving, which is a family tradition, but was not able to eat very much due to severe nausea, and she has lost a few more pounds which she can’t really afford. Hopefully her symptoms will ease over the next week or so, but then the roller coaster starts back up again with her next chemo round starting on December 7.

There is some positive news to report, Sara’s oncologist informed her that the bloodwork prior to the current chemo treatment showed that her CEA levels are down, since she started with the 1st chemo session – yay!!! This is definitely a good sign, and something to hold on to as she toughs it out through the current round.

(For the medically-curious, CEA stands for “carcinoembryonic antigen”, and is a common tumor marker for colon cancer as well as other gastrointestinal cancers.)

P.s. public service announcement – if you would like to help Sara’s family by preparing and/or delivering a meal or two, please sign up here: https://mealtrain.com/2geq85

P.p.s. Sara’s schedule of out-of-town visitors has slowed down for the time being, so she would be happy to have a local friend stop by during the day while her kids are at school – just please text or call first to make sure the timing is ok.

P.p.p.s. The day after Thanksgiving was our brother’s birthday, so please spare a few good thoughts for him too, as he was diagnosed and treated for Stage III colon cancer last year.

If there is one thing that I learned about cancer, after staying with Sara for almost 1 1/2 weeks, is that cancer does not take a vacation. Managing the chemo treatments, their side effects, the medications, the supplements and other doctors’ visits really is a full time job. Sara estimated that she takes about 16 medications and supplements per day, and each has its own schedule, i.e. before meals, during meals, on an empty stomach, on chemo days only, etc. So she has come up with a color-coded schedule and system to try to manage it all (and to aid her “helpers” in knowing what she needs to take). She is experienced now in dealing with the colostomy, but a nurse still comes a few times during the week to help with a complete changeover of the system.

During the rest of the week following the chemo treatments, Sara still had to deal with continuing side effects from the newest drug, Centuximab, such as a rapidly worsening acne-type rash and nausea. Initially Sara was happy to see the rash develop, as it can indicate a good immune response, but the rash also developed on her scalp, along with painful swelling. As instructed by her doctor, she started taking an antibiotic to keep the acne development in check, but after a few days of no relief she then had to double the dose. Her oncologist however is pretty happy with the rash!

I think that one of the most frustrating aspects for Sara is the inability to plan far in advance, as she can be feeling fine one hour and then have debilitating pain or nausea the next. Still, she has a very strong fighting spirit and most of the time she would just keep trucking along; after taking her medicine and taking time for a little meditation when she was able to.

Another thing I learned from staying with her is what she doesn’t need (not that she doesn’t appreciate all of the cards and gifts!) – she now has plenty of soft socks, hats, blankets, ginger (tea, candy, chews, etc) and gloves. The “Meal Train” has been highly appreciated by the whole family, gift cards are great, and donations to her GoFundMe site are a big comfort. Speaking of the GoFundMe account, most of what is raised is being saved for times of financial tightening, such as when Sara’s disability payments run out, or towards alternatives therapies which are not covered by insurance. Examples of the alternative therapies include massages and acupuncture sessions at a facility which is very familiar with cancer patients. While these therapies may not fight the cancer directly, they do promote Sara’s health and well-being. The massage therapy helps address tight muscles from having to sleep partially sitting up and sitting for long periods, such as during chemo treatment, and the acupuncture is oriented towards helping to reduce nausea.

I was very happy to be able to stay with Sara and her family and to help them out with basically whatever needed to be done (though my special talent was exercising her son’s horse several times during the week!). The stay also gave me a much better understanding and appreciation of what she is going through. It was hard to leave, but eventually I had to go back to my own kids and job, though I hope to visit as often as possible. Next big step – Sara starts chemo round # 3 on Monday, this time with all 3 chemo drugs/combinations. So please think good thoughts for her!

Sara and childhood friend Jen Jackson, who flew out from the East Coast with her mom to visit!

Overall, this second round of chemo was an improvement over the first week. But, as Sara experienced, there are still some lows along with the highs. In the picture above, she is geared up for Monday’s chemo treatment, with Pacman the cancer cell-eating pig, a new quilt made by Diana, a reading teacher, and signed by all of the staff members at the elementary school where Sara is a teacher (Black Diamond Elementary school), water, and snacks. The carton next to her contained chocolate coconut water, which was recommended to help ease nausea. Sara was feeling stronger than she had in weeks, in fact she requested the nurses not to include Zofran in the pre-chemo drip, which helps with nausea but also might have given her a headache last week. I was sent out to pick up some food, with a request for Pad Thai :). By the time I returned, the situation had suddenly changed; Sara was feeling very sick to her stomach, shaky, and in no condition to eat her Pad Thai, though she gave it a valiant try. The nurses gave her a little time to see if the nausea would pass, but when her condition deteriorated it was decided that she needed to have the Zofran. She had to rest for a while and took a nap, but the Zofran did work and stopped the nausea cycle. So a few lessons were learned from this experience – chocolate coconut water is not her friend, stick with the Zofran, and just because you are feeling well at the start of chemo doesn’t mean you can take it for granted that this feeling will last.

Sara did feel better on Tuesday, and seemed to rebound faster than the previous chemo session, though she did try to take it a bit easier and not overdo things at home. On Wednesday we headed off to chemo day part 2 – normally it would be a short visit, with the main activity being the removal of the pump, but as it was the first day of starting a new chemo drug, Centuximab, it was a longer than usual visit. Although the Centuximab has milder side effects for most people, there is a very small risk of anaphylactic shock so the first dose is administered slowly and Sara was prepped with a high dose of Benadryl (and the regular dose of Zofran). The Benadryl kind of knocked her out for a while, but she didn’t have any reactions to the new medicine, which is great. No chocolate coconut water this time either, as she thinks it was a factor in feeling so sick on Monday.

In fact she felt well enough after the Wednesday treatment session to go out for a bite to eat, and then a quick visit to the stables where her horse Roxy is staying, with her foal Star. It was great to see Sara feeling well enough to lead Star in from her field, and to visit with Roxy. However after the long day, her neuropathy was bothering her, and the energy boost faded quickly by the time we got home. In general though Sara is starting to learn how to prepare for the chemo treatments, and how to balance her energetic periods so that she doesn’t overdo it and then crash later. So this cancer road might be a winding one, but now that she is starting to get a system going her mood overall is definitely a more positive one!

   

November 5 was Sara’s birthday, and of course we hope it is just one of many more to come. Sara has felt a lot better this week, which is an “off” week from chemo. She has actually been pretty active, lunging her son’s pony (hmm, maybe not such a good idea!), getting the boys up and off to school, and went to a bunch of appointments, including her first acupuncture treatment, which often helps with chemo-related nausea.

So about the other appointments – the first was with a nutritionist who specializes in chemotherapy patients. Sara wants to eat healthily, and her diet is a bit complicated now – gluten free as previously, but with a colostomy. The appointment was very useful; she learned which vitamins and supplements are ok to keep taking while on chemo, and which are not, and that digestive enzymes are good to take, as well as omega 3 supplements and l-glutamine (l-glutamine may help prevent/minimize a potential chemo side effect of neuropathy). Also red meat and pork is out, and lean proteins are in, such as turkey, chicken, and some fish. Organic when available is even better. The nutritionist also suggested that drinking coconut water during chemo may help with nausea, which Sara is willing to try.

The other appointment was with Sara’s oncologist, and she had great news – finally! The results came back from the genetic testing on Sara’s cancer cells, which held a 50% chance of being a mutated type. Unfortunately the mutated type does not usually respond as well to chemo, but her results were fine (not mutated) – yay!! This also gives her more options for chemo, and in fact this changes the chemo schedule a bit:  she was supposed to add in the drug Avastin starting with round 3 of chemo, but now the oncologist is having her start a different drug, Centuximab, with round 2 of chemo (starting Monday 11/9). Apparently the tumors respond better to the Centuximab (or worse, from the tumor’s perspective I guess) and the potential side effects are not as severe as from Avastin. Ironically, a “good” side effect is if the patient develops acne, which reflects a good immune response. Sara is looking forward to being a teenager again, for a little while anyway :).

So back to the birthday festivities – the elementary school where Sara teaches, Black Diamond Elementary, held a special assembly which was recorded on video – all of the students and staff singing happy birthday to Sara. She really felt overwhelmed to see the whole school thinking about her.

Last but not least – your faithful blogger is flying out on Saturday to visit with Sara for a week. So you will get your blog updates straight from the horse’s mouth, so to speak. Oh I almost forgot – I have a public service announcement:  coincidentally on November 5 I had my first-ever colonoscopy (it went fine, as everyone says – the prep is the worst part). As the oldest of 3 siblings, 2 of which have been diagnosed with colon cancer, I was a bit nervous but somehow I got lucky and my scope was clear. I am still waiting to hear back on the results of genetic testing but will probably have an annual colonoscopy from now on. I don’t mind, it is a small but very effective preventive effort. So if you are over 50 and haven’t had a baseline colonoscopy, or you need to have one done at a younger age due to family history – don’t procrastinate, go get your colonoscopy done! Now!!