It’s a yucky kind of gray rainy day in West Tennessee and so it’s been slow moving for everybody I’ve talked to today. Sorry I was MIA for a couple days. My appointment with the doctor yesterday went good but questionable … We saw Dr. Latif who I really liked. He’s nice and seems very compassionate. However, the MIBG scan was negative which is kind of what I expected . He said sometimes this could take 8 to 10 years to sort out … Yes I said years. It was a relief to hear that I didn’t show a pheochromocytoma ! But it sent us back to the drawing board as far as he was concerned and as far as our searching goes..sigh. It’s not an easy thing to track down and I knew that from all of my research . I couldn’t help but cry just a little because I was really hoping for something like a benign Pheo that could be removed and I could get my life back quick. No such luck. We started a new medicine called Cardura which is an alpha blocker, on top of the other five blood pressure medicines that I’m on right now! So I’m spending yesterday and today trying to get used to the new medicine and I think I feel a little bit better today . Of course I haven’t really done much I’m trying to follow the directions on how to get used to an alpha blocker . It blocks the infusion of epinephrine and norepinephrine into your system and helps to keep you from getting the “fight or flight” response in your body. The dogs smell it of course rescue one has taken turn passing by me sniffing the new chemical smell on mom . They’re adjusting to it, amazing how they know! I’m not sure how but their noses are so developed it’s incredible they sniff me from high to low as soon as I come back in from the doctors office every time . The med causes a little dizziness. Yesterday was worse than today and Layla has been close by just to be sure I don’t fall flat on my face . So far it’s not keeping my heart rate below 100 consistently but it hasn’t blasted up to above 120 bpm all day long which is a new development. The biggest problem with all these blocking drugs is that they also block your desire to participate in life, lol. Being the terrible patient that I usually a.m. I have made the executive decision to start and withdraw one medication at a time based on my vital signs. Since I have the ability to monitor both my heart rate and blood pressure and the way I feel internally and how are Espanto things that I’m doing I’m going to try over the next few weeks to knock off one at a time and see if I can get some life juices flowing again . I’ll let you know how it goes it should prove to be interesting! Of course he told me that sometimes these things have triggers… so I should avoid as many carbohydrates as possible. That means try to go on a high-protein diet. This leaves out pretty much most of the things that I like to eat. Luckily I had already started lowering carbohydrates back at the beginning of the year before I got sick and pumping up the protein and fruits and vegetables then so it won’t be a horrible conversion but Rome wasn’t built in a day . Some people really feel it when I eat certain foods..that trigger point I don’t get that. I get a trigger whenever I try to do something physical like swing a golf club or slide the mop around the floor or get on the treadmill or take the dogs out or take a bath…. just pretty much anything that most of us do in regular life. I will say I’m hopeful for controlling the symptoms . He said that he would see me again in six weeks and I have to have the 24 hour urine lab done in four weeks to see if it’s still as elevated as it has been the last three times. He mentioned that we will probably do what’s called an octreotide scan if I’m still having symptoms. It’s a scan that is has radioactive dye tagged with a hormone that’s specific to some of these types of tumors and can find them in lieu of the other scans. They use it when the go to scan is negative, since with all tests there are about 10% or more false negatives.
I have the best husband in the world! Brett is so patient and loving. He went yesterday and bought groceries so that we would have all the correct foods. He’s taking care of everything around the house like he has been since January as best as can. I just thank God for him. He’s such a wonderful man and such a beautiful and loving mate. Without him and the dogs life around here would be pretty solemn. I’m also extremely thankful for my beautiful family, especially my sister. And friends like Kathleen, who keeps up with me no matter that I go silent from time to time.
I don’t know if anybody else’s this way but when I’m processing things I’m not the most communicative person in the world. It’s difficult for me to text back and it’s agonizing for me to try to pick up the telephone and call somebody back. I can’t make myself! I find myself just crawling in my shell and have to think for a while! Course the dog babies sense this and try to entertain and cajole the whole day. Annabelle has been bringing me her ball to throw up and down, up and down… all day long. Wooby and JojoHave had several Jack rat terrier wrestling matches in the middle of the floor just for entertainment value if nothing else. Layla has been hippity-hop, big old girl that she is, jumping up and down, following me everywhere smiling that big black playful Lab face. She even started a play towel fight with me earlier when I tried to dry her off after coming in out of the rain . Lyza Jane has done the Chihuahua yip of and on all day just to keep out snappy (pun intended). sweet yellow lab Chase has come over for petting and loving. He has to lick you under your chin just to let you know he loves you and Buddy the most frightened of all, but also the most loyal at times, has given up his spot on the couch just so that mom can lay down . So I’m surrounded by love and I can’t think of a better place to be and the day has been better than the days before so I’m thankful . Now we’re settling into the evening time watching a little bit of tube. They’re all finding their spots around the house where they know it’s time to slow the clock down and get some rest . I’ll keep you posted on this journey. God has provided as I knew he would and I feel encouraged . I hope this account of the journey helps somebody else, because there are a lot of people out there dealing with things … disease in their body or in their lives. It’s good to know that you always come out on the other side. You might not have all the answers but you do come out on the other side as long as you have faith . Peace and love to all!