A friend of mine has a button hanging from the rear-view mirror in their car that simply states "Cancer Sucks"... and right now, those words best sum up my feelings. This last week has been the most horrific week of my life in so many different ways, yet I am still standing strong at the end of it and am ready to move forward. Here is a re-cap of the weeks events....
Easter Sunday, April 24
I am in Nebraska celebrating Easter with Dan's family when I receive a phone call from my mom that my dad was in the emergency room. She proceeds to tell me the story that earned him such a trip.... Mom, Dad, and my Grandma (not my grandpa because he is still in a nursing home recovering and rehabing from 4 broken ribs) went out to eat lunch for the holiday. After dropping my Grandma off at home, he and my mom went back to their house. Dad told Mom he wasn't feeling well and was going upstairs to use the restroom. The next thing my mom knew, she heard some thuds upstairs like someone was tumbling. She called my dad's name and when he didn't respond, she started to go up the stairs. On her way up, she heard more banging sounds and by the time she got to their bathroom, my dad was face down on the bathroom floor, blue, and bleeding and slightly foaming at the mouth (initially all she told me was face down and blue). She called 911 and they took him to Memorial Hospital in Belleville (the closest hospital to their house). During her call to me, I could hear my dad in the background and he was talking just fine and didn't sound out of it at all. She told me his blood work was normal and his EKG was fine. So, at this point, I wasn't too terribly worried... mostly concerned and anxious for updates.
The next step was a CT scan of his head and face. While they were waiting for that to be done and then waiting for the results, some of the updates my mom was sending me started to worry me. Dan and I had plans to drive home the next morning initially, but after these updates we made the decision to drive home that night. About a minute after we made that decision, I get another text from my mom and this one says... "Well, the Dr. just came in and said there is a mass in the brain". Needless to say, that was extremely difficult to hear and Dan's family was amazing with all of their support. They helped us get packed up in a hurry so we could get on the road. We started our 7 hour drive about 8pm.
45 minutes into our drive, all four kids are asleep and our van proceeds to break down. The belt that runs everything snapped off. So, Dan calls his parents who were nice enough to call around and find us a vehicle big enough for our family to use to drive back to Illinois (THANK YOU MITCH AND KATHY). By the time they find the vehicle, go pick it up, and drive to where we were, it was about 11pm. We got the everyone and everything switched to the new van and off we were once again. By now, my mom lets me know my dad is being admitted to the ICU, not a regular floor; and that he had two more tonic clonic (grand mal) seizures during his time in the ER and that the initial episode at home was the same thing.
Dan drove the majority of the drive, but around 4am I convinced him to let me drive since I was able to get at least some sleep. We got back to Belleville around 6am, I showered and headed straight up to the hospital to relieve my dad's buddy who had stayed with him all night so my mom could go home and try and get some rest.
Monday, April 25
Dad goes down for an MRI in the morning and it shows a 4cm mass in which the oncologist decided needed to be biopsied. We met the neurosurgeon who was going to do the surgery as well as the neurologist assigned to his case. The biopsy was scheduled for Tuesday around noon. Most of today was spent "fighting" with my dad so that he wouldn't get up out of bed or try to pull his foley catheter out. He was so combative the night before that they had to put him in restraints; and he spent most of that night trying to convince his buddy to get some scissors and cut him out of everything. Obviously, the body that was in front of me seemed to have swallow my dad whole. He was "in there" but buried really deep.
Around 7:00 or so this night, the neurologist pulled my mom and I out in the hall and was very up front with us. He told us that it was a "large tumor" and that it "didn't look pretty". As soon as my mom heard those words, she grabbed her chest and knowing that in times of stress she has a history of flipping into A-fib (abnormal heart rhythm), I quickly told the doctor her history. He went to call her cardiologist who said that she needed to be seen first thing in the morning. Meanwhile, I get my dad's nurse and ask her to get a portable pulse ox and heart rate monitor and check out my mom to see if she in fact flipped or if it was an anxiety attack. Luckily, it was anxiety and my mom had medicine she could take. But, for about 30 minutes I was running in between my dad's room and the waiting room checking on them both.
I got home from the hospital that night about 1030pm, was still working on getting in contact with my brother to find out his travel arrangements for the following day and chatted with Dan about how we were going to get him and his family picked up from the airport. My plan was to head back to the hospital in the morning by 7 to relieve another one of his buddies that was staying the night that night..... That was a LONG DAY!
Tuesday, April 26
Biopsy/surgery day... Got to the hospital at 7, my Aunt arrived with my mom (she came in to town from Florida to stay with my mom and help out) around 830ish. My dad had already gone down for his pre-surgical "mapping" MRI to help guide the surgery that afternoon. Once my dad got back from the MRI, my Aunt stayed with my dad so that I could take my mom over to her cardiologists office on the other side of the hospital. For a somewhat impromptu visit, they got her in pretty quickly to be seen which was helpful so we could get back to the ICU before they took dad down for surgery.
Before the appointment, I was stern with my mom and told her that she couldn't keep any symptoms that she has had in the past month from her doctor the way she attempts to keep them from me, although they always have a way of getting out. End result of her appointment: blood work and holter monitor for 3 weeks, along with a follow up appt in 2 weeks while her monitor is still on. This monitor's purpose is to record what her heart is doing 24 hours a day and alert the doctor's office any time she switches over to A-fib. The monitor put me at ease because it was one less thing I would worry about and let her doctor take care of... she couldn't have symptoms and try to hide them.
Dad went down around to the OR around 1130 and the waiting game began. About 230pm we got our first phone call as far as the progress of the surgery. They had just gotten to the brain and were ready to remove the tumor; and told us we should have another call in about 45 minutes or so. An hour and 15 minutes later, we got the call that they were closing him up and that the surgeon would be ready to come out and speak with us shortly. The surgeon informed us that he believed he got the whole tumor out (or gross portion of it that was visible as we learned Friday). Next step, more waiting for at least 48 hours for the pathology report to come in.
Dad came back to the ICU from surgery around 530pm and seemed to be doing great. They warned us that he may still be intubated from surgery because with surgery on the brain they let anesthesia wear off on its own rather than reverse it when surgery is finished. This is to help reduce the pressure inside his head which can cause many other undesirable problems. However, he was recovering quite nicely and was no longer intubated when he came back to the room. Physically he was doing very well and was not experiencing any neurological deficits from surgery, but the effects of the meds and his anesthesia wearing off caused us to "fight" again. He really wanted to get out of bed and insisted on stretching his arterial line to the limits (which could cause a HUGE bloody mess if he would have ripped it out). He was just extremely agitated.
It was about 10pm when another buddy came to take over the night shift to sit with my dad that night. I headed home and chatted with Dan for about an hour before he had to leave to pick up my brother and his family at the airport. Their flight was scheduled to get in at midnight, but didn't end up arriving till just after 1am. By the time he dropped them off at my parents and came back home it was 3am. What my husband won't do for me and my family! That's why I love him so much :-).... Another LONG day!
Wednesday, April 27
What I like to call our "down day". This day was mostly spent waiting and watching my dad become more alert by the hour, which was awesome to see. He was becoming "my dad" again, but was also starting to process just what was happening to him. He got his arterial line, foley, and fluids discontinued this day which made him EXTREMELY happy! By the end of the day (around 7pm) he was transferred out of the ICU and to the telemetry floor. I went home about 930pm this day because my brother volunteered to stay with my dad overnight.
Thursday, April 28
Results day... Lots of visitors were in and out all day which helped pass the time for my family, but for my dad it caused a lot of chaos in his head which was already running circles trying to take everything in. The toughest part of the day until about 6pm was seeing my dad so down and vulnerable and not being able to do anything to make it better. For someone who I've always seen as so strong, he is struggling with maintaining that and letting himself feel what he is feeling.
As I posted on facebook, we received the results this evening. Turns out, this tumor is the EXACT same type of cancer that my Uncle (dad's brother) was diagnosed with in Jan. 2008; stage 4 glioblastoma multiforme... the worst type of brain tumor you can have. The difference between the two brothers is this: location of the tumor, neurological deficits at time of diagnosis (my uncle was already experiencing some paralyzation on one side of body), my dad had insertion of chemotherapy "wafers" into the bed of the old tumor site during surgery which will dissolve and deliver local chemo for about 90 days, and my dad's was operable, whereas my uncles was inoperable because of it's location. What does all of this mean for my dad's prognosis? We would have to wait until the next day... REALLY? Yep, let our minds wonder all night...
Also today, we got our van back! YAY... NOT! It will be getting traded in as soon as we have the chance to go look for a new vehicle. Thank you so much to Dan's parents for driving it all the way here, picking up our two youngest children, and turning right around and driving back to Nebraska. Thank you also to his sister, Leisa, for offering to take our children under her wing for a bit so we are able to concentrate on other responsibilities such as work and school!
Friday, April 29
Q & A day! (and as everyone is talking about today; the royal wedding day which has definitely not been as front and central with our thinking). Early in the morning, about 630am, my dad was transferred to the oncology floor because he no longer needed the telemetry monitoring.
In a nutshell, here is what we found out today. Textbooks say that with treatment (surgery, radiation, and chemotherapy) all we are going to do is "slow the train down, not stop it" and that the prognosis is extremely poor. Having said that, reality has shown that it IS beatable. The oncologist we spoke with today said that he has a patient who had this type of tumor, took the chemo that my dad will be put on next for four years before stopping taking it. After that time, she has been tumor free for 1 year. So, though it is not likely, nor are the odds in our favor, the chance is there and allows us to have some hope... at least until we see how my dad's tumor is going to respond to the treatment.
We made the decision and have gotten the ball rolling to switch his treatment (which should start within 2 weeks) over to the Siteman Cancer Center in St. Louis. He is going to be seen by the same doctors who treated my Uncle. EVERY SINGLE doctor that has seen us is totally baffled and intrigued that two brothers have gotten the exact same type of brain tumor (and in such a close time frame). We now know that my dad probably had this tumor growing when my uncle was still living. He even asked his brother's doctors if this was familial, and should he be concerned about it? They all said that it was so rare, that he didn't need to worry. I think there was only record of it ever occurring just ONCE before. So, I guess that makes my family #2. We are hoping that by having my dad treated by the same people, that maybe some research will be able to be done and possibly help discover something that up till now is previously unknown. As of now, doctor's do not know what causes this type of tumor, nor does the "best" known treatment regimen give that grand of a prognosis.
Late this afternoon, we learned there would be a possibility that dad would be able to be discharged today or tomorrow. When we heard this, Dan and I went to my parents house and did some rearranging and set up a bed downstairs and added a hand rail to his outside steps to make it easier on him to get around until he regains all his strength. Obviously, since I am staying at the hospital with my dad tonight, he didn't come home today, so we are hoping tomorrow is the big day!
Sunday is my nephew's 1st birthday. Now that they are in town, we will be able to celebrate his birthday here. We need something to celebrate right now!
Monday I will go back to work and will begin to get used to my new altered life as a daughter who has a father with cancer. I have been my families rock up to this point and I know that I can keep it going because of the amazing support system I have. So, thank you again to everyone for all of their generosity and help with taking some of the burden with the small stuff so that I could be with my family at such a trying time... Continued prayers that my family is able to handle whatever is dealt to us during this journey with grace are greatly appreciated!
