One week ago I took Andy to the hospital for a blood transfusion. His hemoglobin levels were at 5.1.
One week ago, our world was shattered as we heard for the first time of a cancer invading his bone marrow called Multiple Myeloma.
While each day since then has been part of our journey, today seemed like the real first day of our treatment.
Today we drove back up to Froedtert in Menomonee Falls. However, instead of going to the ER, like we did last week, today we went around back to the Cancer Center.
As we were checking in, I noticed both Andy and I were having a really hard time sitting still. We were terrified for this appointment. What on earth were they going to say and what were we going to learn?
Step One was for Andy to go in back and get his first post-hospital blood draw.
Then we waited. We had about an hour before his actual Oncology appointment. I looked at Andy and laughed, "Waiting one hour for oncology this week is MUCH easier than waiting an hour last week!"
Finally it was our turn to head in back. Knees knocking and palms sweating. First we met Dr. A's nurse, Lisa. She was kind, caring, easy to talk to, and easy to understand. She asked Andy a series of questions and mentioned his sodium levels were a little low, but nothing concerning. She also mentioned that his Kidney levels were returning to normal and looked great. OK, OK, this is all sounding positive so far.
She mentioned his platelets were a little low, but overall OK and that if Dr. A was concerned about any of these levels, he would discuss them with us, along with the rest of the results, including hemoglobin levels. Andy asked first, What was the number at.
10.
10?? Tears streamed down both our faces. How is this possible? We left the hospital at it was just over 7. How did we get to 10 after just two doses of the chemo. Well, we also learned that the steroid was a huge contributor to that. Wow. This is just incredible. I wanted his number to stay steady. I didn't expect it to improve!
Then Dr. A came in. Just as kind, and smiling, and patient as he was in the hospital. He gave Andy a quick review and then sat down, took out of piece of paper. He asked if we had done any research...I said a little and he responded, "Ok. So let's talk about what all this means." He spent well over the next 30 minutes talking about MM, the diagnosis, and the treatment plan. He'd stop and ask us if we had questions. He would pause and let us absorb.
If you are reading this, and have any sort of medical background and I get something MAJOR wrong...let me know. If it's something simple that doesn't really impact the story...just ignore me. I have a Business Degree in Human Resources and my PhD is apparently not recognized as it's from Google.
Multiple Myeloma is cancer of the plasma cells. With MM, plasma cells become abnormal and multiple uncontrollably, crowding out the healthy cells in bone marrow, making it difficult for the body to produce the three parts of your blood - red blood cells, white blood cells, and platelets. This can cause several issues for patients, such as the proteins in the plasma cells can cause kidney damage and the kidneys try to process the excess protein from the body (this is why they have been monitoring Andy's kidney function). The protein levels will be a large indicator for us in the future. The protein can also cause the blood to be too thick, which could cause blood clotting. And something about lab instruments...but I don't remember what that means? If the protein number spikes, that's when we know we need to alter medications, re-evaluate treatment, etc. The cancer will also over crowd good cell growth, which is why his hemoglobin numbers were so low. The cancer cells can also grow in the bones, causing the bones to become weak and easily fractured. (There was way more to this explanation, but you get the idea). Dr. A was happy that we seemed to have caught Andy's cancer before it really wreaked havoc on his body and aside from some lesions causing the shoulder pain, his bones seemed to be doing OK.
He reiterated that there was no cure for MM, but treatment options have come SO far in the last 10 years. He also said that pathology from the biopsy was not back yet, but would tell us something about the DNA which would help us possibly understand how Andy will respond to treatment. This is another part I didn't TOTALLY understand and I didn't totally like. So, you're telling me there is a test result out there that might tell us how responsive treatment will be? Dr. A said, don't worry about it. We'll discuss it next month when you are back. It doesn't change how we initially treat MM. OK...Dr. A says don't worry. I won't worry....ish. He also said that 'grading' MM isn't really worth it like it is with other cancers. With MM, we just treat as aggressively as possible and see where we go from there.
OK, so let's talk treatment. On the top of the piece of paper he wrote 'Aggressive - - - > Maintenance'. Basically, with a 4 drug (plus like 700 additional drugs) treatment plan, we are going to knock the cancer way, way, way down. D-R-V-D.
We are going to treat with a steroid - Dexamethasone. This will help with inflammation, allowing room for new cell growth, and, in high levels, can actually help kill MM cells.
V is Velcade. Velcade was described to us as a cancer drug. It's not chemo. But it's a drug used to help kill the cancer cells. Velcade is administered subcutaneously (yup - had to look up that one!) which simply means its given as an injection. Velcade will be given weekly for three weeks and then off one week.
R is for Revlimid. I believe Revlimid is the one that will make Andy glow in the dark. Kidding...not kidding. This one we basically had to sign our life away to get. But it kills the myeloma cells and prevents new cells from growing. Revlimid is administered in a pill form. Andy will take this daily for 21 days and then off for 7.
The final D is the one we just learned about today and surprise - we are getting tomorrow. 'Dara' or Daratumumab is newer in the fight against Multiple Myeloma. This is usually given subcutaneous (I just like saying that now, because I sound smart), but tomorrow will be given via a slow drip IV to really control how Andy responds to the drug. This is given weekly, then every other week, then monthly. Dara can produce infusion reactions...essentially an allergic reaction. So with this one Andy will also take Tylenol, Benadryl, and Pepcid. Dara will help fight the cancer by activating his immune system so basically he can fight cancer on his own.
We'll continue with this cocktail for 4 - 6 months, knocking the cancer as low as it can go. We then have the option of doing a bone marrow transplant. This would be an autologous stem cell transplant. Meaning they would take Andy's stem cells, then give him a SUPER DOSE of chemo that kills EVERYTHING and put the stem cells back into his body, providing them with a nice, clean, cancer free environment in which to grow and thrive, putting Andy into a cancer remission that will last years, and years, and years, (and years and years...should I go on??)
Any questions?
Our heads were spinning. I can't even imagine what we looked like, staring at Dr. Al like deer in headlights. These are cancer drugs, not chemo like we think of it, Dr. Al reiterated. Multiple Myeloma treatments typically make patients feel BETTER. Andy should have a normal appetite, increased energy, and less pain then he's had. He may be radioactive, but he's actually going to feel better. Our goal, Dr. Al's goal, is to allow Andy to live as normal, and as long, of a life as possible.
Dr. Al left and in came nurse Lisa again. She went through ALL the medications again, talking about the over the counter medications Andy would need to help combat side effects of all the medication. This made Andy a little emotional. Andy is healthy. Andy doesn't take medication. Andy really doesn't get sick. And now he has a laundry list of medications he has to take - some in pill form and some through injection.
I stepped out of my body for a minute and looked at my brave, brave husband. You guys. I can't tell you how proud I am of this man. He continues to be MY rock. The strength of our family. I'm SO angry that he is dealing with this, because he doesn't deserve it.
Lisa took us up front where we spent the next 30 minutes scheduling all of Andy's appointments for the next two months. And then we got in our car and drove home.
Overall - today was a really positive day. We certainly exhaled learning how great our lab work was. I still feel like I'm holding my breath a little. Waiting to see how we respond to all the treatments, waiting to see when we get a stem cell transplant, waiting to see...waiting.
But if there's one thing I know - we need to take each day at a time. Each time I break down. Each time I say what if. Each time I realize I'm holding my breath. I look over at Andy and I focus on the here and the now. I focus on the positive and I focus on my faith.
Another thank you for all the spontaneous text messages, phone calls, and other reach outs. Your words of encouragement and support get us through the day. We go back and read the text messages when we feel down. You guys are such a light to us and never underestimate how supportive you have been. Together - we'll all get Andy through this. ♡
OK -and if you are new to my blogs - this is my disclosure that I'm not going back and rereading this one and editing before posting. So....ignore the typos and grammar. This happens from time to time :-)