After receiving the first infusion of chemo on Monday, Sara wasn’t completely finished – she then wore a pump for the next 48 hours which (via her port) kept administering the chemo. Sleeping comfortably is a bit challenging, with the pump on one side and the colostomy bag on the other, but it was manageable. On Wednesday Sara went back to the oncology center to have the pump removed. As she had been suffering from a bit of nausea, the doctor gave her another dose of steroids, though a bit smaller than previously so that it wouldn’t keep her up all night. Given this little energy boost, she was even able to visit her horse Roxy and foal Star, which was very exciting! Sara discovered another side effect of chemo – sensitivity to eating/drinking anything cold – after starting to drink some ice water in a restaurant. Oops! Hopefully the sensitivity will diminish a bit between treatments. Now she gets a “break” from chemo, and the cycle starts again the following Monday (i.e. November 9).

Just a few words about the nausea – the day of the chemo and for the next couple of days afterwards, Sara has been feeling a bit weak; sometimes running a low fever. So as much as she appreciates hearing from everyone, on these days please don’t be offended if you don’t hear back from her, or if she is not up to visitors that day.

Anyway back to the update – Sara also received some news from the tumor board which her oncologist works with, regarding possible surgery on her liver to remove the cancerous areas. The “good” news is that the tumor board did not rule out surgery in the future, especially if there is a good response to the chemo. The “not-so-good” news is that the surgery may take up to 3 separate operations, due to the disparate locations of the cancer cells on the liver. However overall it is reassuring to know that the tumor board is considering future surgery as a possibility.

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

Who (or what) is Pacman? He is the cute and cuddly pink pig that Sara brought with her to the chemo treatment center today, along with her childhood pink blanket. Sara named the pig “Pacman” (or Pac) so that she could imagine killing the cancer cells by Pac running around and eating all of the cancer cells in his path.

Sara did well with her first chemo treatment today, and is now sporting a handy pack, which holds her pump which will continue to pump chemo into her system for 48 more hours. For the moment, she is feeling quite good, even a bit “hyper”, as a high dose of steroids was included in her chemo infusion today. This should start to wear off by tomorrow however. The steroids should also help a bit to increase her appetite. Now it’s time to wait and see if she has any side effects from the treatment, and look forward to ridding her of the cancer cells!

Sara has had a busy week, meeting with different health care professionals to learn about the next step that she is about to embark. She has “stacks and stacks” of documents at home, but I will just mention some of the main points. There is a kind of standard regimen of chemotherapy approaches to combating colon cancer:  Eloxatin (generic – oxaliplatin), Efudex (also known as 5-FU), Avastin, and Xeloda are some. Then there are names for combination therapies – FOLFOX:  combination treatment of 5-FU, folinic acid, and oxaliplatin, FLOX: combination with bolus dose 5-FU, folinic acid, and oxaliplatin, etc.

Sara will start tomorrow with Eloxatin and 5-FU. After a few hours of chemo therapy via her port, she will then go home with a portable pump, which will keep delivering chemo for about 48 more hours. On Wednesday she goes back to the chemo center to have the pump removed. Then she will have 10 days without chemo, and start the cycle on Monday again. In about a month she may also add Avastin to the mix. After 2 months, CT scans will measure the effect of the chemo treatment.

On paper (or screen), this process sounds pretty straight-forward. But as most people know, these drugs are lethal killers – seeking out the cancer cells which is good, but they also don’t discriminate. So please think good thoughts for Sara tomorrow as she kicks off her fight against colon cancer, and that she won’t have much in the way of side effects from the treatment!

Well, the few small steps are a bit figurative, because obviously Sara can walk. What I mean is that over the last few days she had a few “successes”, which may seem small to us but mean a lot to her.

Before I mention the small steps, I just want to add that sometimes there won’t be a blog entry for a day or two. This doesn’t mean that anything is wrong, but sometimes there really isn’t much to update (or it’s tediously mundane). A lot of what Sara is doing right now is resting and trying to gain some weight back so that she is strong and ready to start chemo next Monday.

So the firsts (i.e. since she was hospitalized) include first full shower (after learning how to tape over her various wounds), she took a walk down her gravel driveway with her dog and a friend to get the mail (believe me, it’s a long but scenic driveway), she was able to eat dinner with her family and spend time with them, despite still battling nausea. These may seem like little things, but sometimes the little things can mean a lot, even if that sounds cliché.

The reason for the somewhat cryptic title is that I know a lot of people are wondering if Sara’s news from the oncology appointment today is good news or bad news. I have decided that instead of “labeling” it, the news is just news. And with this information she can move on to the next steps. When I talked to Sara today she was very clear that she wanted me to put this information out here (i.e. on her blog).

The doctor confirmed that she has Stage IV colon cancer, which has metastasized to the liver. The cancer lesions on the liver are on both nodules of the liver, which means that surgery is currently not an option. The plan is to start chemo soon, with the aim of reducing the volume of liver mets and improve the chances of future surgery in the area. As the liver is vital to the functioning of the body, this aspect of her treatment will take priority for the moment. This is not to say that the colon cancer itself will not be treated; the chemo targets colon cancer, regardless of where it is located. Further genetic testing is being done on the liver mets to see if it is a type of mutation which will respond to a targeted chemotherapy, and the results should be available within a few days.

After her appointment, Sara was shown around the chemo area to meet some of the staff and get an idea of what to bring to make herself comfortable during the treatment. She also has an appointment on Friday for a more detailed introduction and explanation of the what to expect and the procedures which will take place during chemo. Right now it is planned that the chemo treatment itself will start next Monday (10/26).

In the meantime, Sara’s “homework” is to rest, eat (she lost a few more pounds since her hospital stay, due to continued pain and nausea) and hopefully a new medicine that the doctor has prescribed will help to improve her appetite.

Again she expressed her gratitude to everyone who has reached out to her and her family during this difficult time.

Picture of our mother, an avid equestrian, wearing riding clothes – Sara likes this picture a lot (sorry it isn’t in great shape)

Sara was able to come home from the hospital late Friday night, and is very happy to be back home with family and pets. She would like to thank all the people who have been so helpful this past week – Samara for coming out from Maryland and staying all week, Jan Davis for helping out and making her bedroom such a comfortable place to return back to, friends and family who have stopped by (Susan, Nikki, Morgan, Tia, Michelle, Aaron) – I’m sure there are others whom I am accidentally forgetting. Not to mention all of the people who have called / texted / e-mailed / posted on Facebook.

Sara was able to go off of some of the stronger painkillers, which is a good sign, but unfortunately the nausea and stomach pain issues are still plaguing her. She has been able to negotiate the stairs at home but will be keeping it to a minimum for now.

A bittersweet move that took place today was that Sara’s horse, Roxy, and Roxy’s baby (Star, born early July 2015), went to live with Sara’s friend and former trainer, Shannon Hendrickson, for a while – especially while Star is weaned as there are other foals there similar in age to Star. Physically, it will be impossible for Sara to look after the pair until she is back to fighting form, and as any horse owner knows, you can’t just put them out to pasture like a potted plant. So although Sara knows this is a great opportunity, it is hard as her childhood dream of breeding her own horse and raising the foal was only realized a few months ago. Brady, Rylan’s pony, is still next door and will hopefully be able to stay there for a while.

Ok so wrapping-up:  tomorrow is a very big day for Sara, so please continue to think good thoughts for her. She will be meeting with her oncologist to discuss her treatment plan and schedule. She is looking forward to the appointment, because having a plan means finally starting to fight the cancer, but understandably nervous at the same time.

Home Sweet Home                                             Star at 2 days old

         

Actually this post is not about the well-known book (well-known to parents of young children, that is). But today Sara and I discussed how being released from the hospital means that she will have to address the colostomy bag, and all of the responsibilities that come with it, head-on. When you are in the hospital, other people take care of many tasks for you, some of which may be unpleasant. Throw in pain from the abdominal surgery, and denial can be a strong factor. To top things off, Sara was weaned off of the pain pump (sniff) last night.

But Sara is very motivated to go home, so the nurses gave Sara and Eric lessons on how to take over the care of the colostomy system. This is not to say that they will be left completely on their own; the hospital will be assigning a home care nurse to check in on them a few times per week, and close friends and family will also be helping with other needs at home.

I just talked to Sara and she sounded like a new person, yay!!! The lung scan was clear so that is a great development. She is up and working on walking around, and will start weaning off of her pain pump with the goal of coming home on Friday. She will also be taught how to handle all of the aspects of the colostomy bag once she is home and doesn’t have the nurses around to take care of it.

I think we are all breathing a collective sigh of relief, Sara deserves some good news at this point!! Sorry!! for all of the exclamation points !!!!

:)))

Small announcement! The blog website address has been updated to: https://sarasfightsong.com
Hopefully that will be a bit easier to remember. The previous address will still work too though. 

Today is not a very big update day, but sometimes that is good. Sara had the port placed this morning. She was awake during the port insertion, but pronounced the procedure as “gross” :). You know she is feeling a bit better when her sense of humor is making an appearance! She also had a walking milestone this morning – from her room to around the nurses’ station, using a walker. While walking helps with some of the internal pain (i.e. gas), the getting in-and-out-of-bed part is still difficult and painful.

Although the port itself doesn’t hurt, she reports that the doctors want her to be walking a bit better (remember, her house has stairs!) and the pain management improved, before she can be discharged. Sometime this weekend is the goal.

So that’s about it, she is working very hard to get better and she really appreciates all the words of support, offers of help, and contributions to the GoFundMe site. I think these collective efforts are helping to relieve some degree of anxiety, which is normal in this type of situation.

Or something like that. This afternoon I’ve finally been able to communicate with Sara directly, and she asked me to further update the blog. The liver biopsy results came back, and the cancer has metastasized there. Cancer cells were also found in her blood. Later this afternoon, Sara had a CT scan done of her lungs. The chemo port insertion surgery will take place tomorrow, though Sara doesn’t know exactly what time yet. This will allow her to start chemotherapy treatment as soon as possible. Despite the difficult news, Sara definitely sounds stronger and very determined. She is able to walk now, albeit slowly, which is a very big step (and a requirement to be discharged from the hospital).