Saturday, August 30, 2014

Update on Scans


My every-3-month-scans were done about 10 days ago, along with a regular brain MRI. I'm sorry that I'm not more prompt about posting results, but since then, I feel like I've been running a marathon. J and I just went through the first week of school...and, well, I'll talk about that in a minute. 

I always get nervous when meeting with Dr. G to get the scan results, but that's not to say that I feel hopeless. Never. I know that whatever the news is, there will be a plan of action. I love that Lindsey comes with me as moral support & interpreter when my head is spinning from medical lingo overload. I love that baby Will steals the show and everyone wants to kiss & snuggle him & smile at his cute face. I also love that there is no small talk or beating around the bush when Dr. G or nurse Carolyn come through the door. Straight away, Carolyn said, "We don't have the results from the MRI yet, but your scans look wonderful, perfect. Now, let's take a look at them." We are immediately relieved of the worry & stress and looking at those weird skeleton/mass scans becomes intriguing. I love seeing the changes between the latest scans and the earlier ones, how little dark blobs have entirely disappeared or shrunk to pin pricks on the screen. I love that I have access to everything, even the medical jargon I need a dictionary to understand. I love taking printed pages out of the office to read and study and compare on my own. Dr. G comes in & basically goes over everything again, including my lab work, which still shows that I'm very low on iron and other good blood nutrients. But besides that, he has good news for us: 1) I have "graduated" to a 4-month scan schedule, which means I don't go back for scans until December!, 2) the experimental drug, PD-1, which I tried to get through the trial/study, has been approved by the FDA and would be available to me...if I needed it, which I gratefully do not at this point. Dr. G said it is a "miracle drug" with dramatic results for melanoma and that he couldn't be more pleased to see his hard work in research bear fruit. Once again, I have to say that of all the times to have melanoma cancer, this is the best time. He told Lindsey and I that in December, I will be at the 1-year mark since going through the IPI treatments successfully; if there is no significant recurrence at the 2-year mark, there is a high percentage I will make it to five years; and after that, there is a 93% chance (is that the right number, Lindsey? I just remember I was astonished & amazed) that I'll make it to TEN years!! Linds said, "We've never heard those numbers before!" It was truly good news! And, 3) to help with my blood counts, Dr. G recommended a cycle of blood transfusions (3 rounds) and a cycle of IV iron transfusions (again, 3 rounds). He wanted these to start right away, so I actually had my first blood transfusion yesterday morning. I feel a bit more energized today, so I'm optimistic. There are a couple more tiny issues to deal with, but Dr. G is "not worried", so I'm trying not to be either. Will be updating as I learn more.

Now, for the beginning of school: I'm so thankful that my scans were done so I could focus more on my girl. It's hard for all of us to believe she's a senior and that this is her last year of high school. I'm very proud of her for becoming more social and for standing up for herself in hard situations. She has also become more comfortable and confident with her true self. She's had to sacrifice quite a lot this past summer with our financial situation and I know my cancer is hard to live with, for all of us. I love her very much. My sweet grandchildren also started school - one 6th grader and two 2nd graders (plus two preschoolers!). Love them with all my heart!

Sunday, August 17, 2014

Sabbath Joys

After my whining, selfish rant yesterday, I woke up this morning feeling ungrateful and small. I apologize. I am really quite blessed. I have a beautiful family - a good, hard-working husband, three wonderful children and two fantastic in-law children; and eight of the smartest, most beautiful grandchildren ever born. I also have loving, supportive parents and siblings who help me navigate this rocky road of life. My friends are the glue that holds me together. They compliment and encourage me, they share their successes and growing spurts with me, and they continually support me through thick & thin. I feel loved, even when I least deserve it.

Most of all, I have the assurance that I am a daughter of a King. I know I have a Heavenly Father who loves me and hears my prayers. I love my Savior. He has blessed me with grace and forgiveness and is beside me in my times of need. I am never alone. I have been blessed with miracles that come at exactly the right time and place. I have hope in every situation. It is just one of the many gifts from God that I treasure. I really must remember this every day. Feeling gratitude brings joy...and it doesn't hurt to be gentle with others AND ourselves...

Saturday, August 16, 2014

Berry Smoothie...Not!

My 3-month exile is almost over - yesterday, J and I went to Huntsman to pick up the two bottles of "berry smoothie" contrast I'll have to drink for scans next Tuesday. Bleh! Just the thought of it makes me shudder. I think it's funny (sort of) that I'm always asked if I've had the contrast before. I guess my answer this time sounded a little annoyed - the radiology receptionist quickly said, "Oh, I'm sorry," which made me feel a little better. On the way back to the elevators, I saw Pam, one of Dr. G's receptionists, and found out she had just had a biopsy on a "spot" found in her latest mammogram. I wanted to cry. She has already battled colon cancer and won the fight. I pray this biopsy comes back benign, but if it doesn't, I pray she'll continue to fight on. Stupid cancer. Actually, that's not true - cancer thinks it is so smart, that it can bombard us sometimes and we'll just give up. Not so. It can't win that easily.

Summer has been, well...a test. My girl is actually anxious to get back to school in 9 days because at least then she'll have something to do and somewhere to be every day. We had some great plans in the beginning, but it all revolved around having a few extra dollars to spend, and sadly, it was not to be. I made some rash promises about events we could attend and places we could go - and now she looks at me with a "yeah, right" in her eyes. I'm still not sleeping well at night, so I go to bed late totally exhausted, and pray I can fall to sleep before the restlessness & voices in my head start. Then, when morning comes, I'm still in bed after 10 (or later) and it takes the rest of the day to  catch up...or not. Sometimes our big adventure for the day is a trip to the library or the post office or the gas station or the pharmacy. Big whoop. We did take the little trip to Manti for the Mormon Miracle Pageant and that was fun (even with the flat tire), but I would have also liked to go to Bear Lake this summer. We missed Raspberry Days! We did drive up to Park City to see the Olympic Park and watch a kids' aerial ski jump competition, but I would have also liked to go see "Wicked" while it was in town. We did go to a Salt Lake Bees baseball game (Dean's work has tickets, so we got in for free), but I would have also liked to go to St. George to see family. I shouldn't complain - we haven't gone hungry and we're still homeowners, but bills have taken all the fun out of life lately. Time for me to get a job, I guess. Everything depends on what my scans show on Tuesday. Can't really plan anything before then...

I have felt pretty good this summer, especially when I compare my life to some of my friends who are fighting cancer. They are right in the thick of it, going through treatments that make them nauseous and  achy and weak and bald. I pray mightily for them. They are doing their best, but they can't do it alone. They are so brave and hopeful and grateful. I am inspired by them. I worry about my fatigue and my gut and all the little things that could be happening inside. It's just what it is. 

I'll write again after my doctor's appointment Wednesday morning. That's where I'll get the results. Say a little prayer that all goes well. Thanks for all your love and support.