Painful days and sleepless nights…

This marks the 6 week point in Shannon’s current chemo treatment. I can affirmatively say that I HATE chemo, and I am pretty sure Shannon does too! Over the past couple of weeks, since his last visit with the oncologist he has continued to become more and more fatigued. His body is not tolerating the chemo well so he is having lots of side effects. He fights a daily battle with nausea and diarrhea, thankfully he has meds to take that will help with those symptoms. He has mouth sores from the chemo which make it hard to eat. The palms of his hands and soles of his feet are very sore, also due to the chemo, which make it hard to be up walking around for any period of time (not that he really feels like it anyway). His blood pressure went up with the chemo. As I was checking it daily it was never under 140/110 so he is now on a blood pressure medication to help keep his BP normal while on the chemo. At this point, he is so fatigued that he is up about 4 hours a day intermittently between naps and sleep.

Two days ago (on Monday) Shannon was so very fatigued, which has become his norm. He can be sitting in the living room with us in the evening literally falling asleep sitting up. It is hard for him to fight the fatigue to stay awake, so he has been taking some naps during our normal “family time”. Alexis and I are coping with this the best we can, we watch a favorite TV show together, play games on the Nintendo, listen to audiobooks (we are finally venturing into the world of Harry Potter) and paint our fingernails. Monday was the day I really became worried about Shannon. He had been up very little that day and barely managed to eat an early dinner with Alexis and I before he was in bed again. I had a gut feeling something wasn’t quite right, but he didn’t have any new symptoms, he was just overwhelmingly fatigued. I woke him up at about 9:30 pm to take his chemo. I had gone back to my office to work a bit and just assumed he had sat in the chair to watch the Olympics (his favorite). I said something to him and didn’t get an answer, when I went to find him he was back in bed asleep, it had only be about 5 minutes since I had woken him up. When I went to bed that night, I found it hard to sleep. Wondering if he was going to be ok through the night, afraid that if I went to sleep and something happened that I wouldn’t realize it. I finally drifted off to sleep around 2:30 am realizing the night was half over and sure everything would be ok until morning. I woke up about an hour later to the sound of Shannon struggling to breathe and moaning when he did because of the pain. He was struggling to breathe because when he did breathe in, it hurt so bad, he couldn’t do anything but grunt/moan with the pain of breathing. This had happened once before, just after starting the chemo and resolved within an hour or so, so he re-positioned himself to be a bit more comfortable, took something for pain and we went back to sleep thinking this would resolve by the time our alarm clocks starting going off.

When our alarms went off and it was time to get up and start the day, Shannon was still in a lot of pain. The pain medicine hadn’t helped much and he was having difficulty moving around and doing anything. After getting Alexis off to school, he was able to find a semi-comfortable position sitting up in the chair propped on a pillow. By 9 am I was becoming increasingly concerned that this was not resolving. I checked his vital signs and found that he was running a low grade temp, his heart rate was elevated and his oxygen level was low. At this point, even when he was sleeping his face was set in a grimace from the pain. After speaking with his primary care provider and oncologists office we decided to go ahead and take him into the ER.

We never expected this  ER visit would be on the agenda for the day. 

We have been avoiding any place he could be exposed to the flu or other circulating illness, so we were reluctant to take him in, but knew he needed to be evaluated quickly. The concern was that he could have developed a pulmonary embolism (blood clot in the lung) based on his symptoms. We went to the ER and they didn’t waste any time getting an EKG, labs, a chest xray, and a CT angiogram.  We were so relieved to learn that Shannon didn’t have a blood clot in his lung. They believe the pain is coming from irritation of the lining of the lung due to the tumors. (You should see the look on the face of an ER doctor when the patient with terminal cancer and pain so bad they can’t breathe well refuses pain medication. It’s comical.)

After learning that there was not a blood clot in the lung and the pain was likely originating from the tumors, Shannon was convinced by the ER doc that he would need to take some pain medication that would decrease the pain and allow him to breathe easier, especially at night while he is sleeping. They are having him use an incentive spirometer (the thing they have you use after surgery so you don’t get pneumonia) at home during the day and use pain medication at night so he can breathe deep enough to prevent pneumonia. He has finally relented and is taking something to help with the pain. It is helping a enough to take the edge off of the pain and allow him to breathe more normally.

He has only been on this chemo for 6 weeks, and it will be another 6 weeks before we can do any imaging to determine if the chemo is working or not. I am so incredibly thankful that he was released from the ER yesterday and at least gets to be at home. I am thankful that the scare we had yesterday was not yet another serious medical challenge to pile on top of his already challenging battle with cancer.

Shannon has the very best attitude! Even when he is in pain and struggling like he was yesterday, he has a smile on his face and keeps everyone laughing. It doesn’t take him long to win over his care team! Please continue to pray for Shannon and our family. Pray that this chemo WORKS and that he is able to get some relief soon. Until then, pray that we can keep his pain under control so that he can breathe easier and not struggle so much. Pray that some better treatment options come up SOON! We know there are some good treatment options in the “pipeline” that aren’t available to us yet, but are hoping that they are available while Shannon is still healthy enough to pursue them. Pray for Alexis especially as she realizes that Shannon is really sick right now. I know it is hard on her to see him sick and she doesn’t see but a fraction of the true reality. He is still able to hide a lot of how bad he feels from her, although we find her sometimes just quietly observing, so I am sure she realizes more than we want her to.

We continue to feel your prayers, even through the painful days and sleepless nights! I will update as soon as we know a bit more. We should be seeing his oncologist soon.

Many thanks and tons of LOVE to all of you on Valentine’s Day!

Rachel and Shannon