Hi family and friends, I know you've been anxiously waiting for information regarding Dave's appointment with the Stanford Multiple Myeloma specialist.
Monday was an incredibly long day. We left at 7:30 a.m. and did not get home until 9:30 p.m. in the evening. It was quite a ride. We hit the blackest clouds I think I've ever seen and the rain was so hard we could barely see.
Upon arriving, Dave went to draw blood. He draws blood so often, I wonder how he has any blood left. Oh ya, he doesn't. Thus, the endless transfusions.
Because of the bone damage due to lesions and swollen, feet, ankles, and lower legs, Dave has a very difficult time walking. He insisted on walking even though a wheelchair would have been easier for him. He is the most courageous and strongest man I have ever met.
By the time his appointment came at 1:20 p.m., we were ready and already tired. People kept getting called, even those who came after us. We were all getting a little restless. It truly is a humbling experience when you are in a unit of the hospital that deals solely with cancer. You see many people fighting the fight and their loving caregivers right by their side. There was a boy around my sons age, wheeled in on a gurney waiting to be seen. Cancer does not discriminate and it does not give pardons to the young. This young boy touched each of us and you can't help but think no matter how hard you have it, someone out there has it harder.
Finally my mom, who I get my patience from, went up and asked about our appointment. Ends up they actually forgot about us. Geesh, not a good start. We did get a free parking pass and a $10 dollar gas card. I think a couple steak dinners would have been nice....
We met with the specialist and one of her team members. They had a lot of questions. The first one being to Dave, "How are you?" Dave, remembering his manners that his momma taught him instantly responded, "Fine." "No he's not!," I interjected. He might as well not have not been there because mom and I didn't allow any information to be left out. If you know Dave, he likes people and he will take the time to ask about others even when we have an appointment to talk about HIM! That's where I come in. I'm the enforcer. "Are you eating,?" the doctor asks Dave. "No, he's not,!" I respond for him. "Are you in any pain?" "Yes, he is. Everything hurts and he is having problems walking, his nose has been bleeding, his feet, ankles, and legs are swollen, he has had to have multiple transfusions...." See what I mean? Dave might of well just stayed home. He was really interrupting MY appointment with the doctor, tee, hee.
The doctor stated she reviewed his numbers that we brought from his oncologist and stated it didn't look like the Daratumumab (new chemo that he started on December 30) was working after four rounds. Daratumumab is a new break though drug that has shown positive response for patients who have relapsed or are refractory to two or three previous options.
She didn't have his blood results back from earlier in the day and after asking what was the date on the labs she was reviewing, it seemed she had yet to receive his latest labs that were conducted that previous Thursday. "Doctor, according to my research, many patients don't see any results until after six rounds. If you are looking at results that are before his forth round and you don't even have today's labs, shouldn't we wait until we get today's labs back before making that assessment,?" I asked.
She agreed and we decided if there was no improvement we would add another chemo and make it a combo of Dara/Dex/Cart. I asked about a couple other combos that I studied and she said they were good options, but because of Dave's low blood red cells and low platelets, they wouldn't be a good option for him.
I asked her to look at Dave's legs and feet so we could determine why they are so swollen. We thought it might be a reaction to a drug he used for the first time that helps him with calcium, but she believed it had more to do with other issues, like perhaps the fact that he is not eating and not getting enough protein among other possibilities that we will be looking into.
Being the mature daughter that I am, I responded, "Ah ha, I knew it!" Then mom and I proceeded to rat him out regarding his picky eating habits (way before cancer). I told the doctor I've raised two kids and I'm very versed on holding someone down to get them to take something they don't want. Man, German doctor's are very serious. I got nothing from her on that one.
We went over some other things to look out for: blood clotting, spine issues, etc. that we will be discussing with his oncologist. "If you have any questions, you can always message me on the Standford's MyHealth page," the doctor shared. I looked at her with all the seriousness I could muster up, "You sure you want to open your email up to me?" Silly, silly doctor....
Let's just put it this way, when I asked for Dave's oncologist's email because I had some questions for him, Dave responded, "You're going to be polite, right?"
"Geesh, Dave, I'm not a monster! I'm your daughter! O.K, same thing!" Mostly when you want your dad to get the best care possible and the only thing he can think to ask the doctor is, "You're German, right?" God love him. He can't help himself.
Needless to say, we left feeling like we didn't get far. I reviewed Dave's latest numbers today and it does look like there has been little improvement. I'm waiting for his M-spike results, which, along with checking his bone marrow and IGa, is a good lab to review in order to track his progress. He will be meeting with his local oncologist on Friday to discuss further, but it looks like we are going to have to try something new. I'll keep you posted.
After getting home, I had a pinched nerve in my lower back and a sore neck from being in the car and waiting at the hospital so long. Mom and Dave have been waiting in hospitals and doctor's offices and driving the drive to Stanford more than anyone should have to endure.
The love, compassion, and respect I have for my mom and Dave are beyond words. One day in their shoes makes be realize what amazing human beings my parents are. I plan to be with both of them, hand-in-hand, through this fight until we can't fight anymore!
Thank you all for the love and support. Keep your positive texts and messages coming. Dave is tired, but he is reading your text messages. Don't forget my mom either. Caregivers often get ignored, but she is in it for the long haul and it is emotionally and physically taxing for her as well.
Dave's number is: 559-740-8815 and mom's is 559-909-0863.
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