Saturday, August 31, 2013
The New Drug & Surgery is Planned...
Well, I began taking the new drug on August 19th. I take 2 pills a day of the Veliparib--one in the morning & one twelve hours later in the evening. From the very beginning it caused kind of a headachy feeling & some pretty good stomach cramps. The study is for Veliparib in a time-release capsule, so I had to spend over 12 hours at Huntsman on day 4 of the drug, having them draw blood through my port every 1-2 hours so they could check how it was releasing & breaking down in my bloodstream. They told me not to expect to see any results with my CA-125 levels or the size/shape/color of the nodule in my chest wall for a month or two. The headachiness (is that even a word?) has gotten much better, but I'm still having issues with the stomach cramping. This week we discovered why that is still a problem for me....I also have a fairly significant tumor in my abdomen...again. At my first appointment with Dr. Werner, she told me that she wanted me to schedule an appointment with Dr. Dodson, the gynecological surgeon/oncologist that was partners with the Dr. who originally did my de-bulking surgery. I went to that appointment just this last Tuesday, thinking it was going to be no big deal. Unfortunately, during his exam, he found another tumor in the abdominal area that didn't show up clearly on any of the scans. I'm thinking that Dr. Werner suspected this because she sent me to him & called ahead of my appointment to talk to him about it. Dr. Dodson gives all of us a very good feeling, & did a great job of explaining my options. They are:1) Do nothing...and it will get worse. 2) Do radiation on the tumor. This would shrink it & decrease the discomfort I'm feeling, but it won't fix things. He's pretty certain the tumor will just return & that I'll want surgery down the road. Trying to do surgery on tissue that has already been irradiated isn't a good thing...things just don't heal well after radiation. 3) Do surgery now. From what he described, this surgery is going to be pretty similar to my first one. Then again, they don't always know what they're getting into until they open you up--it could be worse. Although, the prospect of this doesn't thrill me, I feel that it's my best option & Dr. Dodson felt confident that it's the right choice for me. He frankly said that some of the other physicians that sit on the "tumor board" are probably going to tell him that he's crazy & thinking too optimistically. But, he felt that,my overall health is pretty good....despite the darned cancer...& he was hopeful that I could still have some good quality time ahead of me. Vern, Mom & I had a good feeling speaking to him, & although I would love to receive visions and/or have angels speak loudly to me telling me exactly what I'm supposed to do....I feel that the still, small voice of the Spirit was whispering through Dr. Dodson's quiet, confident one as he spoke to us. That feeling has continued to be with me these past few days, so we are going ahead with plans for the surgery on September 18th. It helped that before we left his office, Dr. Dodson called both Dr. Prystas & Dr. Werner to speak to them & get their opinions on the subject. They both agreed with him, for which I am grateful. They know me much better than the other Dr.'s who sit on the "tumor board". They know what I'm fighting for...the wonderful support I receive from my family & friends...& they know the faith I have in my Heavenly Father & Savior. I know there are some more difficult times ahead in the next few months, & I am counting on the faith & prayers of those close to me to sustain me during those low moments. I am still continually mindful of, & grateful for, the fact that I know my Heavenly Father & Savior love me & have a plan that is perfect for me. Thank you for your continual faith, prayers & sustaining service to me & my family. Love always, Kim
Saturday, August 10, 2013
Back from Houston
Much has happened in the past 3 weeks, & I'll do my best to update...but it's late Saturday night, & I'm exhausted so I'll just write the highlights:
- My insurance company did officially deny my coverage out-of-network, & according to the Utah State Insurance Dept., they have no obligation to pay for anything out-of-network. We signed a contract with them 12 years ago, little imagining that we would ever need to go out-of-network, so the contract stands.
- I was finally able to get an appointment with MD Anderson scheduled for August 13th. In the meantime, Dr. Prystas learned that they were starting a study of a new ovarian cancer drug at Huntsman, & she was able to get me an appointment with Dr. Theresa Werner on Friday, August 2nd.
- The day before my appointment at Huntsman, MD Anderson called & asked if I could come sooner--on August 6th. I said "yes", & went about making plans to get out there. Vern had been planning for months on going with the YM in our ward (Hunter's group) for their High Adventure activity during this week. I didn't want him to miss it, especially since I thought I might not be in Houston for that long, so Kali made arrangements to go with me. I owe a huge debt of gratitude to friends of my parents, the Wells', for so generously getting us the airline tickets with their Frequent Flyer Miles--it would have cost a small fortune to get tickets on that short of notice!
- Vern, Mom & I met with Dr. Werner & her team on the Friday before we left for Houston & were super impressed with them. It is a huge clinic, but it also felt very personal & the level of compassion & caring we felt from them made us all feel comfortable. Dr. Werner had a couple of other chemo options to offer us, but she feels that my best option is to participate in a phase 1 study of a new drug called Veliparib. It is a parp inhibitor, & works against fighting cancer cells in a way that is different from traditional chemotherapy. If you want to know more about it, you can look it up online--I won't even attempt to give you the layman's version. She encouraged me to keep the appointment at MD Anderson, to see if they had anything that might be better for me. She felt confident that they would be able to help me determine what would be the best treatment option.
- Kali & I flew out just this past Monday, & met with a Dr. Westin there on Tuesday morning. MD Anderson is HUUUUGE! Besides that, there are about a dozen different enormous hospitals in the same approximately 10 block area where MD Anderson is. If you think that IMC in Murray is big, you have no concept of what a big hospital even looks like. My actual appointment with Dr. Westin was pretty short. She had reviewed all my records, & asked what I was looking for. When I gave her the history of the past week, & what Huntsman was able to do for me, she basically said that was my best option. They are also doing studies on different parp inhibitors from various drug companies in Houston, but considering the amount of traveling back & forth that I would need to do, & the fact that I would be paying "out-of-pocket" for some of my care, she felt that the studies being done at MD Anderson weren't going to be better enough to justify all the extra time & expense to participate. I had received a Priesthood blessing on Sunday before we left, where I was promised that revelation would come, & the Dr.'s & I would know what was necessary to do. The decision couldn't have been any easier to make--I was incredibly grateful for that! Now, I just have to wait to see how much of my $16,800 deposit will be returned....hmmm.
- So, with all that being done, I went back to the hotel room & called Huntsman to get scheduled for the Veliparib clinical trial. Then, Kali & I spent the next 2 days slumming around Houston in the heat (97 degrees!) and humidity (We have no idea what it was, but it felt like at least 100!). I'm very glad that we went, & so grateful to have Kali's sweet company. She is an emotional rock, an excellent navigator, & just darned fun to be around!
Subscribe to:
Posts (Atom)