Back to Reality

I had planned to update this site much sooner, but I had to tell some people personally before I posted the following and those of you who know me, know that I am really good at procrastination. Plus I’ve been swamped at work lately which means that by the time I arrive home at 7pm most nights I crash, hard. Weekends have not provided much of a respite either, there are always projects needing attention. We also had some house guests for the better part of a week – Yay!!! Company!! We love company! Gasbarro’s B&B is open for business. My garden is looking fabulous (pictures to follow) and Pat has found his gardening niche in excising hundreds of dandelions from our lawn. His next project is to lift the shed 6-8 inches as it currently leans toward its back left corner - poor Cooper is terrified of the building and won’t even go inside. Perhaps I should listen to his animal instincts?? Why the original builder thought placing a shed on the edge of the wetlands was good location is beyond me. The 4 pillars on which the shed is supposed to rest have shifted and 2 have fallen over completely. Pat’s got his work cut out for him, but he has a plan (and a spreadsheet- wink, wink) and will only do the work when I am around and have 911 on standby. Standby for photos.

See told you I was good at procrastinating – I managed to get off topic for a whole paragraph and make you forget why you were here in the first place. Pat and I met with Dr. Nauta (my favorite Chief of Surgery at Mt. Auburn) twice this past month to begin to formulate a plan since surgery became my only option. His initial reaction was to tell me he wanted to schedule surgery for as soon as possible. I suggested October or November. We decided to do an MRI and see where things stood and make a decision based on the size and location of the tumor. I agreed to the MRI for May figuring that even if was bad news the earliest we could schedule surgery would be June and that would get me to the deadline I needed to reach in terms of my disability insurance at work. I needed to be back at work for 6 months full time in order to qualify for some changes to my disability insurance. Long story short - June 3 will be 6 months and it’s now definite that I will make this date. Again off topic…

I had the MRI done on May 13 and met with Dr. Nauta immediately afterwards. He had not had time to get a clear read of it, but he was able to say there wasn’t significant growth. However, we have decided to go ahead and schedule surgery for early July. Pat and I talked at length about this and weighed the pros and cons of delaying the surgery. The biggest concern is the proximity of the femoral nerve (and vein and artery) to the tumor. In an abdomen that has not undergone surgery, it would be easy to locate and avoid this, however my insides are so mixed up and full of adhesions that nothing is where it should be. I’ve had some leg issues over the past few months which we are attributing to the tumor pressing on the femoral nerve – twinges, twitches and one episode of the leg buckling out from underneath me. It could be unrelated which is what we are hoping, but we aren’t taking any chances. Dr. Nauta will be including a neurosurgeon on his surgical team to avoid a repeat of my last surgery.

We know that no matter when the surgery occurs, I will lose my bladder so this is a huge reason for me to delay the surgery as long as possible. The doctors don’t know what sort of hook up I will be left with (ostomy-wise) and probably won’t know until they go in. We’ve discussed a few options and before the surgery I will give them my order of preference, if it comes down to actually having a choice. There’s a good chance the decision will be made for me by the size of the remaining urether. The longer I delay the surgery, the greater the chance of there being small intestine, bowel, or colon involvement. Dr. Nauta does not see the bowel loop that Dr. Zeitman saw on my CT scan, but he can’t say for certain until he is inside. Since I would really like to avoid waking up with 2 ostomies, I’m opting for surgery sooner rather than later. We are hoping this will also mean the surgery will be less invasive than previous ones - perhaps the only area that will be impacted will be the bladder and I won’t have to deal with an NG tube, a bowel asleep for days, and a lengthy hospital stay.

Right now I am waiting to hear back from Dr. Nauta with a surgery date – he wants to assemble his ideal team for this –my urologist (Dr. Karian) and a neurosurgeon. Being summer and vacation season it’s harder to coordinate this many schedules. I’m seeing Dr. Lange this week just to check in and hope to have a firm date by the end of the week. Then I can start to get things in order to prepare – my mind, my work, the house, Pat, etc. I’m not looking forward to this. I just started to feel pretty good, got busy and distracted with work and am actually looking forward to the possibility of traveling. Instead I’m looking at surgery where the best possible outcome is the loss of my bladder. Enough said….