It has been nearly a week since my last post and I won’t lie; it was ROUGH. In case you missed it, my newer chemo caused severe diarrhea and GI issues. I had severe abdominal pain pretty much anytime I stood up and would have intermittent abdominal pain while sitting or lying down. What likely happened is the chemo and diarrhea stripped the lining of my stomach and GI system creating small ulcers all along my digestive tract. Anytime I ate or drank, when that passed through the ulcers, it would result in severe pain.
Sunday was a better day than Saturday and Monday was a little better than Sunday. I braved a few solid foods on Monday, foolishly, and paid for it dearly on Tuesday and Wednesday. Apart from bringing my kids to/from school, I spend most of the week on the couch. I managed to sit at the table and do some homeschool with our pre-schooler here and there. I was unable to eat solids and even my normal powdered protein that I normally drink every morning was hurting my system. I lived off of straight aloe juice, the aloe stomach formula I shared in my last post and bone broth.
Thankfully my bone broth is homemade and chuck full of not just protein and healing things like collagen and glutamine but minerals as well. If you are ever sick with any tummy issues, I HIGHLY recommend this recipe and just making the broth to put in your freezer to have on hand. Her chicken mineral bone broth recipe can be found here but I HIGHLY recommend you visit her website or buy her Cancer Fighting Kitchen cookbook. EVERY recipe of hers that I’ve had has been absolutely DELICIOUS. She truly focuses on foods that have anti-inflammatory properties which honestly are good for EVERYONE. If you have an autoimmune disease or struggle with eczema, sinus issues, or just not great general well being, her recipes and book can certainly give you amazing meal options that will nourish and bring down inflammation. There are a LOT of recipes on her website as well so I highly encourage anyone and everyone to check it out or follow her on instagram/twitter/facebook! If you don’t have the energy to make your own bone broth, I’d recommend this kind.
Tuesday was quite horrid with the amount of pain I was in. I didn’t want to even get off the couch to refill my water. That evening, we had our first of 6 Apologetics classes at church and I knew there was just no way I was going. I plan to listen to that one when it becomes available online here. I texted Josiah and asked him to pick up one of the clear gatorades on his way home because I realized I was loosing electrolytes and needed more than what the water was giving me. I think that evening was when the bone broth had finally thawed enough for me to hack some broth ice chunks out and warm it. I hadn’t had the energy to even put the frozen broth on the stove and reheat it. So Josiah brought home the gatorade and I gingerly sipped on some of that which my body wanted me to CHUG…but I knew better. Before bed I drank a little more bone broth and thankfully slept well that evening.
On Wednesday, I stopped and picked up a more natural form of gatorade called Body Armor that a few friends recommended. It was DELICIOUS but I didn’t account for it containing some acidic vitamins and it caused more GI pain so I put it back in the fridge and waited a few more days to drink it. I have since been able to successfully drink it with no pain and it IS delicious and full of good vitamins and electrolytes, and is Gluten free and Non-GMO! I’d choose that over gatorade ANY DAY!
I managed to go in for my weekly blood draw on Wednesday as well as provide a stool sample (SO GROSS, I KNOW) to test me for a c-diff infection. My symptoms definitely lined up with this kind of infection and the amount and severity of Diarrhea and GI pain is NOT normal for this chemo. Truthfully, I probably should have gone in for IV hydration but that would have meant a trip to Seattle or the ER and I was in no condition to travel and quite frankly, didn’t want to spend hours in the ER with cold/flu season in full swing.
Wednesday night, I woke up to use the bathroom (1 guess why) and remembered I hadn’t taken my Slippery elm Bark capsules before bed. I think I’ve forgotten to mention this AMAZING herb before now? Ok so slippery elm bark is a demulcent. This means that it is capable of soothing the lining of the stomach and intestines and reducing irritation. It is beneficial for those with Irritable Bowel Diseases like Chron’s, IBS, Ulcerative Colitis, and more. It is also HIGHLY beneficial in soothing sore throats and coughs as well as calming heartburn and GERD. It is one of the main ingredients in one of my favorite teas, Throat Coat. I have been drinking this periodically to help with sores in my mouth and to soothe my stomach and GI. Anytime anyone in my family has a cold or sore throat they ASK for this tea because it is so soothing!
Recent studies have shown that slippery elm bark can help treat the symptoms associated with inflammatory bowel diseases like Crohn’s disease, ulcerative colitis, and irritable bowel syndrome (IBS). I find the capsules are very easy to swallow but you can also purchase it in a powder and make a tea (bear in mind you may be drinking the powder sediment at the bottom of the cup) or just buy the throat coat tea. have these organic slippery elm lozenges in my amazon cart to have on hand as we are running low on cough drops and these also contain menthol, licorice, and echinacea (which helps the immune system)!
I also remembered that last time this horrible GI stuff happened, I used glutamine powder to help my GI system heal. I hadn’t even considered it because my particular Her2+ cancer likes to use glutamine and similar amino acids as a fuel source. However, I was desperate. I had lost 10 lbs, was still somewhat dehydrated, and knew my electrolytes were getting out of balance…my heart rate was slightly elevated just when resting. I took some of the glutamine powder and 4 slippery elm capsules, prayed that my GI system would use all the glutamine and not any of the cancer, and went back to bed.
I woke up on Thursday and I felt SO much better. I knew I still needed to be cautious and likely not consume any solids for another day so I got up, took more glutamine and slippery elm then waited about 30 minutes before having some bone broth. I helped my kiddos get ready for school then stopped at Grocery Outlet to pick up coconut water. Why coconut water you ask? Because it is one of the BEST liquid sources of potassium and I knew based on what happened last time, my potassium was likely low (my bloodwork from Wednesday confirmed this). My ABSOLUTE FAVORITE coconut water is Taste Nirvana and thankfully our grocery outlet happened to have some. I’ve tried other coconut waters and the all come off as a little bitter or…..earthy tasting. Not the taste nirvana; its sweet and refreshing! I just discovered that they have a coconut water WITH aloe, which would be an amazing option too. I have literally a gallon of aloe juice so I can just add that but if you want the benefits of both, that’s a great option!
I have to say that although I was feeling better Thursday morning although the GI pain was not as severe or as frequent, my body was EXHAUSTED. I literally had to use the grocery cart to support my weight or I couldn’t have walked through the store on my own. This was still better than being doubled over in pain while standing up! I got home and slowly drank the coconut water, waiting to see if it would help or hurt. I had enough energy to wash a few dishes then sit down for a rest. A little later I picked up a small pile of laundry from my room and walked it to the washing machine. Just that act had me winded…but no GI pain! I continued with coconut milk, aloe stomach formula, and bone broth in small amounts during the day. By the end of the day I was feeling better….tired but not as fatigued. Praise the Lord!!! I also called my oncologist to make sure my blood counts were good enough for chemo and they were! Not only that, I tested NEGATIVE for a c-diff infection!! Praise the Lord again!!!
Friday morning was our normal early morning getting ready to drop kiddos off before I took the 7:20 ferry to Seattle for Chemo. I was feeling SO much better and not very fatigued. A sweet friend watched M, J and E went to before school care, and another sweet friend met me and drove me to/from my appt and kept me company. I admit I was a bit nervous about that appointment and what my options would be for treatment considering how horribly my body was responding to the 5FU chemo. As my nurse, Adam, accessed my port, we had our usual conversation about how my week went and I was honest. I shared it was bad, even though I was on an upswing, I knew I couldn’t go through that crisis again and again. He sympathetically agreed and verbalized some suggestions that he would make to Dr. Chue, my oncologist, at their morning meeting just moments later. I opted to forgo the IV Vitamin C this week as you must have a hearty meal prior and that wasn’t going to happen. I’d had my broth, aloe, and coconut juice and gingerly nibbled SLOWLY on a banana….my first solid food since Monday (prior to monday my previous solid food was Friday during chemo). So we decided to double my hydration as I clearly needed it.
After their meeting, Dr. Chue and my Naturopath (ND) there, Dr. Ho, met me in an exam room. Dr. Chue was concerned about my reaction and asked how we decreased the Xeloda dose when this happened before. I remembered the dosing so he suggested we either keep the same dose but only administer every other week, or reduce the dose by 1/3 and do it weekly (until Surgery). I opted for the reduced dose, which he agreed was likely a better option. He also said he wanted me to fill my anti-diarrhea med prescription and said he was going to put in a prescription for a medication that will slow down my GI system and not allow it to just rush everything through. He was pleased with how I was doing otherwise and we discussed my upcoming appointment with the Swedish Cancer Center’s surgeon for a 2nd opinion on surgery. He said he would be happy to speak with her but hopefully his notes would be enough for her to agree with his assessment of my case. He left and I chatted with my ND about the past week. We discussed the glutamine and the risk vs benefits. She explained that she’s been studying it in depth because she does recommend it to patients to help protect against chemo induce neuropathy. She explained most of the studies done are using about 30G of glutamine to see if it “feeds” the cancer. Most studies are done in petri dishes and some have shown uptake, some have shown none, which supports the theory that some cancer’s don’t utilize it while others do. She suggested I just do a much smaller amount, 10G as needed (I’ve only been doing 5G and it’s worked fabulously) and continue with my meds and supplements that block the cancer from absorbing it. Hopefully those combined with the chemo will keep the cancer from using the glutamine and hopefully my GI system will absorb most of it. She also suggested using activated charcoal if I have diarrhea in the middle of the night as it will bind it up but it has to be taken 2 hours away from meds, supplements or food. I left that exam room feeling so wonderful about our plan of action!
Overall it was a great chemo day. I chatted with my friend who came with me about motherhood, family, church, chickens, and so much more! I was able to chat with a few other patients about the metabolic meds and supplements as well. One of them whom I mentioned last time is not doing well; her platelets are critical. Will you please pray for Y that the Lord will be merciful and allow the metabolic meds/supplements and the transfusion she will receive today to work. That she will start to improve and heal. Her daughter came over and thanked me again for sharing Jane’s book and said they got the meds and supplement and have started. Another patient and his sister wanted to chat about Jane’s book some more too. I was able to FaceTime with a fb friend who I’ve only had a chance to text and call. She also has metastatic breast cancer and it was great to finally “meet” her and see her! I received a bill for my past few IVC treatments and thankfully we can pay that next week with the donations of some friends and some of the money I’ve made from my SeneGence skincare and cosmetics fundraiser!
I was so happy to order some Pho soup and be able to eat a small amount of it for lunch and later a small amount for dinner too! I wasn’t able to eat the meat or veggies with it; just the broth and noodles but it was delicious! After chemo, we took the 4:15 ferry back to Bremerton and I headed home shortly before our family went to our small group’s dinner. I was pretty tired so I just went in and sat on the couch as opposed to milling about to socialize. My sweet friends come over and chatted with me, happy to hear I was doing better and had a good plan of action for further treatments. My Pho was sitting in front of me on the coffee table and one of the gals kindly offered to warm it up for me! We ended up leaving a bit early but before we left, they took turns praying for us- I was so grateful for their fellowship and love! They also gifted us with a card and donations for my upcoming treatments.
I am just beyond humbled and grateful for ALL the support we have received this past week. So many have donated their time to come with me, to watch our kiddos, buy my supplements, make monetary donations, fill a mealtrain, and offer help to clean our house! Our church sent gorgeous flours and an encouraging note and so many from our church have been the ones above to offer help! The body of Christ is so amazing to see in action!
I am also excited to share that I am now an Amazon Affiliate and As an Amazon Associate I earn from qualifying purchases. Prior to today, I would post links to products I love and when you made a purchase, all the money went to Amazon and the sellers. Today, and in the future, the links I provided will likely be affiliate links. What this means is that if you click on one of those Amazon links and you decide to order one of those products, not only does amazon and the seller get paid but Amazon pays me for “advertising.” Those payments will allow me to pay for more of my cancer treatments! I personally promise that I will never promote a product that I don’t believe is beneficial or haven’t tried and loved myself.