Monday, April 20, 2009
After 4 or 5 days of feeling really well, and good news regarding the test in that I don't have to go to Boston to have it done...today has brought some more not so good news. It turns out that one of the meds that I am on is contraindicated for this scan. The doctor doesn't want me off the medication and is now trying to determine what other medication he could potentially put me on instead. I will have to wait for the medication to completely be out of my system before we can proceed with the testing! We are extremely frustrated with all of this and are becoming more and more concerned about the amount of time that has passed and the continued waiting we are dealing with for the surgery. This waiting game is taking it's toll...I am trying my best to be patient and trusting in the Lord...I know that this is his timing...I just don't understand why we keep hitting so many bumps in the road!
Tuesday, April 14, 2009
Yesterday I received a call from the surgeon regarding the MRI I had last Wednesday. It seems that this test showed a second lesion on the right side...this one in the abdominal area. The test was not conclusive enough to say that these lesions were pheos. They could possibly be neurofibromas which are typically benign tumors associated with Neurofibromatosis. Typically they grow on or under the surface of the skin, but sometimes develop internally. I will have to have another test done to determine whether or not these are pheos. There is a nuclear scan called a MIBG that specifically diagnosis pheos. I am now waiting to hear when this test will be done. If these lesions turn out not to be pheo, then we must decide how to proceed with them...leave them alone or take them out and analyze them.
On a fun note, we spent part of the weekend with Rob's cousin. We took a drive up to the mountains and showed him that part of this beautiful state. It was a fun day.
Jess had her first softball game Monday afternoon...unfortunately they did not win! She still had fun anyway.
Jake is working on his Pinewood Derby car for cub scouts. Weigh ins are this week and the race is Saturday.
Danny is working on a bass clarinet solo for his school's talent show!
Wednesday, April 8, 2009
Today we head to Boston for my MRI of the lesion below my right kidney. I did have the opportunity to review the original films with my endocrinologist. We are both amazed that the radiologist missed it...although understandable to some extinct, given he was really just focusing on the adrenals. He told me that if this lesion is highly suspicious for a pheo, that we will have to scan from the neck down to the bladder area to look for more. Rob and I are starting to think that this is probably a good idea to do anyway prior to surgery. If there is something somewhere that we don't know about that could possibly be knicked during surgery, that would not be good. These tumors (pheos) can also form in the neck, bladder, and around the areas of the heart. They will be inserting lines and catheters into those areas during surgery, so it makes sense to know if there is something there before they go poking around!!
So I continue to keep my eyes on God through all of this and let Him take hold of me and carry me through this!
Thank you all for your continued thoughts, prayers, and support!!!
Saturday, April 4, 2009
Was up last night at 4 am...so much on my mind!!!!!!
On a fun note, Jess is loving softball at the school. The practices are intense, but she is having a ball. They got there uniforms and she is extremely excited about that! Can't wait for her games to start soon!!!
Danny took a leveled reading test this week and read at grade level with 98% accurracy and good speed! Comprehension is still a struggle, but the school is working hard with him on that. He wants to play his bass clarinet in the student talent show in two weeks...as my good friend Dan would say...Yikes!!!
Jake is spending the day outside at the local Boy Scout Camp for "Chuckwagon." An annual team competition that tests their knowledge and skills. The teams consisit of boys from all different age groups. It is wet an muddy but should be a fun day!!
I'm going to get some exercise...yeah...very light and very limited, but hey...it's better than nothing!!!
Friday, April 3, 2009
This afternoon the surgeon called to talk to me about the films I had brought with me to my appt. He had the radiologist at Beth Israel review them and it turns out there is a 3 cm lesion below my right kidney. The pheo is in my left adrenal gland. He wants me to have another MRI at Beth Israel to take a closer look at this lesion. It just so happens it was on the "scout film" of the MRI that showed the pheo, but apparantly was missed by the radiologist here in town. We are very thankful that we chose to go to Boston at this point and that this was found before I went in for surgery! Sadly the surgeon said that it is something that will most likely need to be removed. That being said, I am no longer a candidate for laprascopic surgery and will have to have open surgery instead. This means a longer surgery, longer hospital stay, and longer recovery. Don't know if the date of surgery will be moved up because of this...time will tell. Oh and I forgot to mention that not only does May 21 mess up our camping plans, but our anniversary (17 years) is May 23rd!
Discouraging news today from the surgeon. They have given us a tentative date of May 21st. This is much later than we had hoped. After speaking with the surgeon on Tues., he gave us the impression that he wanted a certain anesthesiologist in on my case if she were available. The feeling I got from the admin at the office was quite different...no guarantees, highly unlikely, but we can request. This will obviously warrant a conversation with the surgeon once again. I will be going down to meet with the anesthesiologist prior to surgery and am waiting to here when that appt will be. There is always the chance the surgery could be sooner, but ???? I left a message with my Endocrinologist to let hime know as well. This was very discouraging...not only is the date a long time from now, but it interferes with my sister coming to visit...my nephew graduates from high school on June 4, and he is Valedictorian of his class, as well as our big "kick off" camping trip was scheduled for Memorial Day Weekend. Even if they move the surgery up a week, I'm not sure I will be up to the trip, as they will have switched my meds by then and I could be feeing pretty lousy. Pushing out past the holiday weekend isn't really an option either for the same reasons.