Jan 16, 2020 Latest post:
Jun 30, 2020
On January 3rd, 2020 I received a phone call from my Dr's office with the results of an MRI I had done on my brain for "intense intermittent headaches" that I was pretty sure were migraine's, but they didn't act like migraines, so I attributed to stress. You see, for 6 months I had been having 1-5min throbbing bilateral temple headaches that would go away completely by themselves. It started out 1 every 2 weeks. Then 1 a week. It had been 2 years since I had my prescription evaluated so I got my prescription checked, glaucoma tested, eye pressure testing, I even paid for that fancy eye map thing they always offer at the optometrist office that you never get because it's a waste of money at our age! Everything came back clear. They progressed to 1 a day with associated dizziness, but only during the headache. I got a massage to see if that helped. Then they picked up in intensity and pain level to a couple times a week. I went and saw the chiropractor. Was it a pinched nerve? Not so much. The symptoms progressed to the point where it woke me up a couple of nights one week. Now, we tell our patients if it wakes you from a dead sleep, then it's a problem, so I finally made an appointment with my PCP (primary care physician). The physician did blood work and ordered an MRI with and without contrast. This was December 13th 2019, so we scheduled the MRI for first thing Jan 2020 so it would hit the deductible for 2020 instead of 2019, since I hadn't used any of it that year. Afterall, it certainly wasn't going to show anything, it was just something we had to rule out. So my family came to visit for the holidays and we went on with our lives. The last week of December I started having headaches several times a day, always bilateral temple, always self resolving in that 1-5min range, but I started to have balance issues during the dizziness and numbness around my mouth and nose. Again, all of it would go away on it's own and it would start and stop with the headache.
I really hadn't expected it to show anything. Honestly, I thought we would be chasing this around for awhile trying to pin it to something. It was such an odd presentation.
I had the MRI done on Jan 2nd at 1pm. My Dr.'s Office called me at 9:30 Jan 3rd. I was already worried because we had a follow-up appointment scheduled in another 2 weeks to get the results and if the Dr's office was calling me now, something must be up. She told me I had a 3.5cm (yep, cm not mm) mass in my L lobe and that she was going to refer me to oncology, so I should pick up any weird numbers that call throughout that day. Did I have any questions?
About an hour later I received a call from Rocky Mountain Cancer Center. Now at this point we had not done a biopsy, they were just calling it a "brain mass" and we scheduled a consult for Jan 13th. An hour later she called and asked if I could make it to the office in an hour? Sure. Within the hour she called back and said "Dr. G talked to Dr. Xin and they want you to go to the ER immediately, don't come to the office, if you have kids I would get them somewhere they can spend the night". So we went home and packed our bags, Charley had only hours to process the news and now I had 30min to try and explain what was going on to my kids and before we dropped them off at the Grandparents house.
Charley and I went to Penrose Main ER at 3pm. We were taken back into the ER and told there was a group of doc's consulting about me but that I should be prepared to be admitted. About an hour after being there I got to meet Dr. Xin, my neurosurgeon. He told me, "I made room for you at 1000 tomorrow morning. I am not sure if I am going to biopsy the mass or resect it, I won't know until I get in there." He then showed us the MRI's. Yep, there was definitely a "mass". There was also midline shift and a crap ton of swelling. I told him if it was all the same to him to just go ahead and resect if at all possible and when did I have to stop eating? Dr. Xin said that more than likely it would be resected and that I has until midnight to eat. Dr. Xin wanted to run some more tests so I sent Charley to go grab us some steaks for dinner! While Charley was grabbing dinner, they ran a series of CT scans of my chest, head and abdomen to look for other tumors to try and help them identify what it was. Nothing was found anywhere else in my body. They sent me for another MRI so that they could geo-map the mass for the following day's procedure. I was then admitted that evening following the scans. 9 hours since the first phone call was going by quickly and changing my life by the minute. We were told if all went well that I could expect to spend at least 2 days in the ICU then at least 2 more days on the 11th floor while we wait for the pathology results to come back. Was it cancer? Was it just an infection? Only time would tell during the procedure the next morning. The grandparents brought the kids by that evening and it w the s nice to have them visit.
Sleep did not come easily that night. So many things are running through your mind about what would happen. What will they find? What will be the outcome of the surgery? Is it cancer or an infection? Am I going to be telling my family goodbye for the last time? A couple hours of rest was all that was managed that night. Morning arrived along with another visit from my in laws (mother, father, sister, brother, nephew) and the kiddos. Having my family there to support me before the surgery was great. Many hugs, kisses and well wishes and next thing I knew they were there to take me down.
These kinds of situations are something you cannot prepare for. This is one of those times life just kicks you in the sto.ach and pulls the rug out from under your feet. Having someone there for you through this process can make a huge difference. I am thankful that I had Charley with me. He kept me laughing thru it all. The stress and pressure of this is tremendous and Charley was always there with his love, humor and support. Charley being there gave me the comfort and support that was needed during this troubling time.
My mass was 95% resected Jan 4th. I got bumped for an emergency that came in through the ER so I didn't actually get going until 1:30 and it was about a 6 hour surgery. I can't even imagine what that was like for the few people who had been told. We had no time to adapt. After surgery I woke up and said, "I can move my extremities, I can feel my nose and I can talk. Please go get my husband, he is not going to believe you when you tell him." I spent 14 hours in the ICU proving to them I could walk before they agreed I did not need intensive care monitoring and they let me push my own wheelchair (which had my cardiac monitor on it) back to the 11th floor. I spent two days on the 11th floor, had already been cleared by the physical therapist and wanted to go home. They finally agreed and on Jan 7th at 3pm I was discharged. I am on low dose seizure medication (keppra) and steroids (an already tapering dose of Prednisone).
At this point my lovely Sister had come down to watch the kids for us. Afterall, winter break was over and they had to return to school. We wanted to make that as normal as possible for them, so she said she would "pack for a week, expect to stay for 2-3 weeks." To say this was quick and unexpected is certainly the understatement of the year! I am ever so grateful to be doing as well as I am and recovering as well as I am. Frankly, I was just happy to wake up!
Monday Jan 13th we got the pathology results. It is a Grade IV (very agressive), Stage IV (incurable) Glioblastoma (brain cancer). From what I was told they "Grade" Brain Cancer Tumors I-IV and I have the most aggressive and anything incurable is automatically a stage 3-4.
That's the bad news. Now for the plan. Because there is definitely a plan.
We are going to radiate the remainder of it for 6 weeks (daily mon-fri.) and take oral Chemo pills during this phase. I have an appointment Jan 16th for a CT and a "face mask fitting". The plan is to have all of it ready to go and to begin radiation treatment Monday. I am glad things are moving so quickly. After that I get a break and we see how my body responded to the treatment. The biggest concern is brain swelling, so I am not allowed to drive for at least 2 months. Phase 2 is largely dependent on the results we get from phase 1. It will likely be 6 months of increased dose chemo, then low dose chemo for the remainder of my life. We will get quarterly MRI's and just keep an eye on it, intervene as needed. Hopefully shock it into submission with radiation.
In short, the plan is to live with cancer for a very long time!