This week has been very wearing on me. I intended to post, but I have been so busy. Busy mourning the loss of a friend who really knew what this all feels like, and yet another with the loss of Frank (30 y/o melanoma warrior), busy trying to keep up at school, busy having fun with my family at the zoo, busy getting unbelievably sick overnight on Friday, busy visiting with company (Todd, Jamie, Trace and Dallas), and again busy with schoolwork.
I guess I’ll start with what I left unsaid last week regarding Brian’s urology appt. We decided to do nothing for now. Dr. Wakefield didn’t feel it to be beneficial at this point to investigate what was going on with the blood in the urine. The symptom stopped by itself, and Brian felt the urgency issue to be just minor. Those details led Dr. Wakefield to believe that whatever was or is going on is not an emergency.
If it is cancer in the bladder, it is nearly positively melanoma; in which case we wouldn’t do anything differently at this point than what we are already doing. It is highly unlikely to be actual bladder cancer. For those of you that might not know this, each cancer has its own DNA makeup. So Brian has had melanoma of the gall bladder, melanoma of the pancreas, melanoma of the brain…not gall bladder cancer, not pancreatic cancer, and not brain cancer. This matters because each DNA reacts differently to chemo; thus the reasoning behind specific treatments for specific cancers.
Because the symptoms stopped on their own, there is also a very real possibility that there might be other causes besides possible additional melanoma mets. The cause could have been an infection (although he honestly didn’t think so), or a reaction to the chemo (which he felt to be a good chance, considering Brian had chemo on a Monday, and blood in the urine 2 days later), or the tumor behind the left kidney could be pushing on the kidney, causing it to bleed (also a good chance...he told us the CT still shows that it is not attached to the kidney, but that it could very likely cause bleeding).
Another reason we opted to not investigate with a scope of the bladder...Dr. Wakefield felt it was too uncomfortable of a procedure that wouldn’t give us any real answers at this point. He felt it safe to speculate for now, considering Brian’s most recent scan on Aug. 6 showed nothing that would explain this, and also knowing that Brian will have a scan tomorrow (Sept. 17). He also told us that if it does turn out to be something on the lining of his bladder, he can treat it independent of the other treatments (such as burning off the tumors). He said there are many levels of medication that can help Brian if he does start to experience symptoms, and there are procedures that can be done, relatively easily, to ensure that Brian doesn’t have to live with any uncomfortable symptoms. This was a relief, considering how evil melanoma can be.
So fast forward to tonight. We are heading out in the morning to Columbia for an MRI of the brain and CT of the body. Please send prayers our way, as this is an important benchmark in Brian’s chemo treatment. God willing, Brian will continue with his next chemo treatment on Tuesday. We will see Dr. Anderson on Tues. morning before moving forward.
Brian is battling hand/foot syndrome. His hands are very weak and are blistery. He describes them as being tender to the touch, burning, tingling, and unable to stretch out. His hands are feeling a little better in the past few days. The bottoms of his feet are sensitive too. He has lost some taste sensation, and often can’t taste much. He is very sensitive to spicy or hot foods, and his voice sounds raspy. He still has little speckles of black on his head, but he hasn’t had his hair cut for many weeks. His facial hair has not grown back…except for the white hairs! How odd! As of now, it is mostly gone, but he still has eyebrows and eyelashes. He is losing some of the other hair on his body too.
Now for the zoo trip...we decided on Tuesday to go to Omaha overnight on Thursday, then to the zoo on Friday. The kids were very excited, and they love spontaneity! We were surprised on Thursday afternoon by a gift from the faculty and staff of St. Gregory's, which helped pay for our hotel room, dinner, gas money, and zoo expenses. Again, we are blessed by so many who are part of our journey.
3 Great Kids after dinner at the Quaker Steak and Lube
Tye jumping into the pool at the hotel. You can see how far away I am. The child has no fear! He takes after Rachel and Amberlea, my other little fishes!
Monkeys in the jungle!
Brian used to tell people that a shark attacked him as a funny way to explain his massive scar on his leg. Oh, how I wish it had just been a shark!
The weather was awesome, the kids were angels, and the day was full of great memories. The wheelchair was a new adventure, as far as taking it on a trip. The girls helped push some, which made Brian a little nervous when it came to the hills at the zoo! I packed him most of the way, which was great exercise and really not a big deal, except for the lower level of the jungle. This was when I was really wishing he had 4WD! Otherwise, it was no problem. I did wonder what was running through Brian's mind when we were near the carousel...we came out of the petting zoo into the midst of about 8 wheelchairs (group of elderly). I won't pretend to understand how he feels, but he tells me that the wheelchair is not him. I suppose everyone who has ever had to use a wheelchair, either temporary or permanent, feels this way. How could you ever really get used to it? I have tried, unsuccessfully so far, to convince him that the wheelchair and/or physical limitations do not define him as a person, as a husband, as a daddy. It is a struggle he is facing, and one only he can come to terms with.
We made it back to the ville by 6ish, and the girls headed to their Dad's for the weekend. By midnight I was in sad shape, and was literally miserable for the next 12+ hours. I suspect it was food poisoning, not to knock the zoo food...but it was so violent, I just think that might be the culprit. No one else ate the nachos, so I think that might have been the problem. I told Brian, and I am serious about this, I don't know if I have ever been that sick before! I was utterly miserable, to say the least.
About 8am, Tye crawled in bed with me. I said...oh, honey, don't get too close. He said...because why? I said...Mommy's sick. He said...but I wike you! Later in the morning, I awoke to a stuffed cow kissing me on the lips. (the boy has cow on the brain!) I said...oh, thank you. And he said...this cow loves you Mom. Then he crawled up in bed and rubbed my back. He is just a sweety. I think God makes him this way so we can better handle his orneriness!
I stayed in bed until 4pm, and Brian was really hoping I was going to start feeling better. He started saying things about who was going to take care of him and so on. He actually was feeling good, luckily, and was able to do a few loads of laundry and spend time with Tye. Still, it was probably the first time in months upon months that Brian took care of Tye by himself for such a long time. I was finally feeling back to about 75% by 10pm after some soup and crackers. And today, I've felt back to normal. I am just thankful it didn't interfere with our zoo trip.
We had visitors today, with Brian's brother and his wife and son, and Brian's cousin. We hung out at Dad's most of the day because we had yet another open house. We are still waiting for St. Joseph to do the trick, and appreciate all prayers to get our house sold soon.
Hopefully that should catch us up. So many of you have lent your support in so many ways, and we are eternally grateful to have you with us. We are lifted by your love and prayers, and are stronger because of you. Please continue to pray for Brian and our family, and all those affected by cancer, including Kathy, Bryce www.brycedbrown.com, Mike and Sheila.
Many blessings for a great week.
Jenni
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