Monday was great...good news from the kidney doctor, hope for some of the edema and made it through the chemo ok...or so I thought. Turns out the super-heavy duty steroids they give with the chemo really caused me to retain even more fluid. I was at work on Tuesday and felt my legs filling up like water balloons. Thank God for my fat lady pants. Was able to make it to the Meet the Team dinner for Claire's school lacrosse team but my legs were so swollen it hurt to straighten them or bend them fully.
Wednesday wasn't much better although its always better first thing in the morning. Standing vertically just sends fluid into my legs. I got to my appointment with my favorite doctor, Doug Levin...the one who punched my ticket for this rollercoaster. He is what I describe as "funny-grumpy" but he's got the driest, most ascerbic sense of humor I've some across in a physician. He asked me how things were going and I told him its been quite a whirlwind. He said looking at my chart that I have a lot of really smart physicians working on my case. Good to know.
He talked about what a good prognosis I have due to my "excellent performance status" (why thanks, Doc, you know how to make a girl blush.) I told him that I feel so much of my prognosis is due to his diligence in finding what was wrong. I asked him how many cases of amyloidosis he diagnosed a year and he said he couldn't say. He said the original assessment of "fatty liver" just didn't fit with the symptoms. Too often when diagnosing, a physician will get "anchored" to a diagnosis and not consider other diagnoses that are more in line with the patient's symptoms. His time practicing internal medicine many years ago taught him to look beyond his specialty and take a comprehensive look at all the systems. Thank God he did.
He's also gotten some action on trying to get the edema under control. He told me, "Just keep your eye on your online chart. You should see some new prescriptions showing up there." Sure enough, I got a call from the kidney doctor today increasing the dosage of one medicine and adding another to try to help.
This morning was pretty rough as I had my first bout of nausea and abdominal pain. The pain was the worst pain I've felt in a looooong time...like since I was pushing out a baby without an epidural type pain. It only lasted about 1-1/2 hours but it really knocked me for a loop. I told Amy I'm just considering it as a preview of coming attractions. :/
I did feel better, made it through my chemo today just fine and Alan, Claire and I went out to dinner like a normal family again. It was a nice respite. As we were driving to chemo today, I told Al I still wonder at times. "Is this really happening? Is this really my life? From normal work, family, workout, social stuff to ongoing doctors and drugs and IVs." Seems so surreal at times. I went from someone who avoided taking medication at all cost to someone who now takes four medicines every day and have two others to take to deal with symptoms or side effects.
Really, the worst part of the last few days was not directly due to my disease. On Wednesday, I sent my Redfront Macaw, Pippi to another home. It wasn't totally due to my illness but looking at having very limited time and energy over the next year, I knew it wasn't fair to her to leave her alone, parked in her cage when she needs her human family and interaction. So, my vet found a wonderful woman who already has one Redfront to adopt her. She's going to an awesome home but I'll miss my bud. I've had her since 2006 when she came here as the bird version of a little puppy.
There are still plenty of mercies large and small in the midst of it. Yesterday, I got a call from Deb, the sister of my sister-in-law, Karen. Connect those dots. Karen, Deb and Cindy are the three sisters with whom I spend a weekend in November every year making 13 or so different kinds of Christmas cookies. We've also done Thanksgiving with Deb and her husband Paul and other family celebrations. Although we don't see each other frequently, we feel really close and consider one another sisters. Deb was so full of encouragement and uplifting words. She reminded me of how strong I am and that I just need to focus on what I need to do to get well and that I will have a lot of life to enjoy on the other side of this. The conversation just filled me with such joy and hope. I didn't have sisters growing up but I am so blessed to have three wonderful women as my sisters now.
The team at OSU is so responsive to make sure I have what I need to get well and feel better. They handle all discussions with the insurance company and nothing has been slowed down because of that. Even today, they ordered me some anti-nausea medication while I was at chemo. While I was still there, the pharmacy called and said the insurance company required pre-approval to fill the prescription. I was ready to call the drug plan when I mentioned it to the nurse. She called the nurse practitioner who contacted the drug plan and pharmacy so it was waiting for us when we got to the pharmacy. The James is definitely a well-oiled machine.
I may only have one cycle of chemotherapy before the stem cell transplant. Hollie, an incredible nurse practitioner who works with Dr. Efebera said that the insurance company may not approve the second cycle that would occur when I get back. I'll leave it up to Dr. Efebera to get it worked out. Right now, I'm scheduled to have my stem cells collected on April 2. That's the birthday of one of my best friends, Allyn. So, we'll have something to share on April 2...the beginning of her life and the beginning of the process to start mine over.
So, I get Friday off from doctor visits and can try to have a normal weekend before I go through stem cell testing and orientation on Monday....
Keep the prayers and positive vibes coming! I'll be here listening to the Sound of Music soundtrack, my go to happy music. I need a happy goatherd.
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