Not What We Thought...

Sorry for the long silence. I sat down many times to write in the last months as we approached and then passed our one year mark since diagnosis, but nothing ever came of it. Here are a few "highlights" from the last little while.

About five months ago Aaron's first cancer medication, Tarceva, lost its effectiveness. Not what we were hoping for or expecting. During the process of waiting for test results the FDA approved the next treatment Aaron needed: Tagrisso. Days after it became available Aaron had his first dose. It wasn't an easy medication to get his hands on, but he and Jeff made some calls and figured it all out. Tagrisso has been doing a great job. Aaron had scans a month ago and they were clear of any obvious signs of cancer. He's having the best response we could hope for. The side effects to this drug are dry skin and painful mouth sores. 

Recently, we thought Tagrisso was losing its effectiveness too. We were not prepared for that kind of news, but within a matter of days Aaron's health bottomed out. By the time I got him to the hospital he was needing 15 liters of oxygen and with that he was only saturating at 90%. I couldn't believe a medication could stop working so quickly and that the cancer could take over so rapidly. He went from normal to bad in a few days. We weren't prepared to have to do chemo at this point in the game, but as it turned out it was not what we thought. 

An internist came in and looked at Aaron and asked the usual questions and then told us he did not think Tagrisso had stopped working. What a relief! Instead he believed, and was correct in his assumption, that Aaron had blood clots. A special CT scan was taken and confirmed that Aaron's lungs were full of blood clots (pulmonary embolism) and those clots were large and causing the heart to be restricted (that's why he was having problems with his heart racing). He was immediately put on a blood thinner and admitted into the hospital.

The next day an ultrasound was taken of his legs and more blood clots were found in his left leg between the knee and thigh (all blood clots are worrisome, but above the knee are cause for even more alarm). We agreed to a simple procedure to have a filter placed in a vein. It's called an IVC filter.  It would prevent any additional clots from moving from the leg through the heart and into the lungs. One thing we learned about blood clots is that blood thinners don't dissolve clots. Blood thinners keep the existing clots from getting bigger and prevent more clots from forming.  The body then produces special enzymes which dissolve existing clots all on its own. Our bodies are truly amazing.

To place the filter, a small incision was made on the right side of Aaron's neck (they used lidocaine to numb the site and fentanyl for pain management) and then a small catheter was threaded down the vein and through the heart. The filter was threaded through that catheter and placed. Our kids have had many picc lines placed over the years and we imagined this was going to be a similar experience, but a few things didn't go as planned. First, the pain medications did not work. I can't imagine. Ow. Ow. Ow. Second, when the catheter was being pulled it "tickled" his heart. Since his heart was already under a lot of stress due to the extensive blood clots this "tickling" set it off into afribulation. His heart raced to 210. A medicine was administered to stop the heart and restart it in hopes that it would put the heart back into normal rhythm. This was done three times, but it didn't work. Aaron's heart kept racing. Another drug was administered to slow his heart down. It was crazy watching his monitor. His heart raced from the low 100s to the 140s in seconds. Up and down, up and down, up and down it raced for 10.5 hours. He was placed in ICU for close monitoring. I shut off the lights and phones in his room and he was able to drift off to sleep for about an hour. As he slept I noticed his heart kept racing up and down, but it stopped going into the 140s and soon the 130s. The nurse told Aaron if he could even sleep for an hour it would really help his heart. At 2:30a.m. his heart slipped back into it's normal rhythm. Sometimes the heart can go back into afribulation, but the doctors don't think that will happen with Aaron because the Afib in this case was caused by the procedure and the stress the heart was already under due to the blood clots.

Aaron spent 6 days in the hospital and is now home recovering. He has to give himself a shot of blood thiner in the stomach each morning and evening. I cannot do needles, so he's on his own there except some of our kids like to watch when he does it, so I guess he's not totally alone. He will have to be on blood thinners until the doctor declares his cancer as "cured". We found out the hard way that blood clots are very common in cancer patients. Cancer causes hyper coagulation. I have felt so grateful that we are dealing with blood clots and not a failing cancer medication.

On a somewhat different note, I've been enjoying the transformations spring brings. On my walks I find myself wanting to take pictures of every tree bud, flower, and billowy cloud filled sky. I think it's because I have tried to remember these things from last spring and I can't. I don't remember the flowers and trees springing into bloom. I don't remember hearing the birds sing. Instead of signs of spring I have the sweetest and fondest memories of a multitude of people surrounding us with faith, prayers, and love. Thank you again for seeing us through a tough time.