Well, I was released from the hospital at 8:00 on Thursday night. Those five days were without a doubt the longest four days of my life. (Dramatic, but true.) I have never felt as bad as I did on Monday and Tuesday. After about 234 IV antibiotics, I finally started finding relief for my throat late Tuesday night. I hadn’t eaten or drank anything since Sunday evening…and finally on Tuesday night, I forced myself to eat. My throat felt like I was swallowing glass every time I tried to swallow. It didn’t matter if it was water going down…it hurt like heck. I had Magic Mouthwash, Chloraseptic spray, and stuff that looked like melted butter…and none of it helped worth a darn. I had a sore in my mouth, inside my bottom lip that I wanted to straight up cut out of my mouth. It would have felt better than the stupid store rubbing up against my teeth.
On Wednesday things started looking up…it was about time. The only positive about this visit was that I got to spend some unexpected time with some of my favorite nurses and techs. That, was good for my soul. The rest of it…was not. I had never treasured each and every bite of food the way I did that day. Oh, the things we take for granted.
Because of two injections I got on Monday and Tuesday called Granix, my white blood cells were through the roof when Thursday rolled around. They were so high that the Infectious Disease doctor was wanting to keep me until Friday because she was concerned I had an infection. On Sunday, my white count was .3. On Thursday morning, it was 49. Wowzer!
I couldn’t wait to get home and see my babies…especially since this little spontaneous hospital stay was just that…unplanned. I hadn’t expected to be in the hospital for four full days when we went in on Monday. I missed my little loves.
Because I was released on Thursday, that meant we were going to be able to meet with the bone marrow doctor on Friday–Praise the Lord! His office actually called Danny to move my appointment back a few hours and then asked about moving it to next week…oh no she didn’t! I have been so anxious about this appointment because I am desperately wanting to know what our plan is going to be moving forward. So, Danny begged…and she let us keep the appointment. Thank you, lady who let us keep the appointment. Me and my anxiety appreciate you.
So if you’ve read the blog from the beginning, you may recall that our first visit with Dr. Matthews wasn’t so fantastic. He came across as incredibly knowledgable, but also very matter-of-fact and straight to the point. He doesn’t sugar coat things and he just wasn’t warm and fuzzy. (I know, I know. As I typed that, I just asked myself how many doctor’s I’ve met who are actually “warm and fuzzy”. That may not be the best wording to use…but you know what I mean. And if you don’t, just let it go and keep reading.) He wasn’t incredibly positive with the news he presented to us. I left the appointment feeling really discouraged and down. It turns out my mom was feeling the same way. Danny thought it was a positive meeting…shocker. He must have been wearing his rose colored glasses that day.
Because of our last meeting, going into our appointment yesterday, I felt pretty anxious. Not horrible, because we had already talked to Dr. Stone regarding the results of the PET scan, so I kind of
assumed hoped that he wasn’t going to give us bad news.
So here we go. We got there at 11:00 and I had my blood work done. As I was finishing in the lab, Dr. Matthews comes in and notices me an says, “Oh, I know you! You got out of the hospital!” We chatted for a minute and then he said, “Did you get a PET scan done?” I’m sorry, what? Dude, that’s why we’re here! We’re supposed to be going over the results with you! I told him that I had one last Friday and that I had asked for the results to be sent straight to him…yah, that didn’t happen. Someone dropped the ball. I wanted to throw that ball into that someone’s face.
Apparently he could see the panic in my eyes and said, “Oh, don’t worry! I called yesterday and asked for the results to be sent over here. They said they would get it done today. Don’t worry, don’t worry. I’ll get them.” Did he not know that our appointment was in like 7 minutes? We clearly have very different personalities.
Once I was done, we went back down to the 2nd floor to his office and waited. We weren’t sitting down for 2 minutes before they called us back. The nurse asked me some routine questions, did vitals, etc., and then said Dr. Matthews would be in in a few minutes. With or without the PET scan? Only time would tell…
Not 5 minutes later, he comes marching in with papers rolled up and big smile on his face. (He’s not warm and fuzzy, remember? So this was already going better than last time.) He said he had gotten the report and that the cancer had a complete response to the treatment. (WHAT?! Can I get an Amen?!) He threw out the word ‘remission’ and I almost fell out of my chair…and then he clarified. He said that he misspoke and said that remission is not a good word to use. Instead of remission, he said that there was a complete response to the treatment…which essentially mean that there is currently NO ACTIVE CANCER in my body. NONE. ZERO. ZILCH. NADA. You know what we call that, folks? Answered prayers. I may even go out on a limb and say a miracle.
He said himself that he doesn’t see response like this often. He normally sees the worst or the worst…and this case thus far has been pretty close to ideal. (Knock on wood. Do it. Now.) So before we go any further, I need to praise sweet baby Jesus for answering our prayers.
At this point during the appointment, I’m thinking, “Oh, so since there’s no active cancer, then a 6th round isn’t necessary and we can just move right in to the bone marrow transplant, right?” Wrong. (Insert punch in the gut.) So although the report was all positive…we still need to do a 6th round of chemo–the same regimen I have been doing the previous 4 rounds. Bummer. I’ve been saying lately that because of how awful the past week was that I was really hoping to not have to do another round…but you know what? It is what it is. It’s what my doctor feels is necessary to completely defeat this disease. So, we will do another round.
I’m technically supposed to start Round 6 this coming Monday…but both Dr. Stone and Dr. Matthews said that in my current state, my body simply could not handle the chemo. I would end up back in the hospital shorty after I finished that round. So, Round 6 will start Monday, March 27…the day after my sweet Hud’s 1st birthday. I’ve been so worried that with everything going on that the timing wouldn’t work out for him to get his first birthday party right around his birthday…either I would be getting treatment, or would be feeling too crummy to put it together and pull it all off. The way things are now, I have the next two weeks to get things together for his party. Pretty sure the timing in a God thing. See, He’s always lookin’ out.
Right after my appointment Friday, Dr. Matthews was going to take whatever necessary steps to get insurance approval for organ testing. We’re hoping that I’ll be able to get the testing done this upcoming week. Organ testing has to be done in order to do the bone marrow transplant. Once it’s approved, I’ll go in and have different tests done on my major organs. This will be through blood tests, an echocardiogram, urine tests, pulmonary function tests, and whatever other tests they need to do to make sure my organs are good to move forward. Speaking of urine tests…this may be TMI, but I have to collect all of my urine for 24 hours. Holy smokes. But don’t worry, we were sent home with two large orange jugs for collection. This should be nice.
Once the testing is done, Dr. Matthews will then take the necessary steps to get approval for the bone marrow collection and the transplant. This could take a week or two. Prayers that all of this goes smoothly and that the insurance company doesn’t get greedy.
As I mentioned before, I will have Round 6 March 27-31. I was a little okay with having a Round 6 because that meant I got to see all of my nurses again…and then he burst my bubble. Round 6 (and everything else from here on out) has to be done at Medical City Dallas (MCD). In case you’re not familiar with the Dallas area…Celina (where we live) and Medical City Dallas are not close. Scratch that. They are FAR apart. Traffic is a beating. But, we’ll make it work.
[Putting on my rosy glasses.] This is an incredible hospital with a doctor that I trust completely. Although we will be driving far, often, I will be getting the best care and treatment. Plus, this just means that my favorite nurses have to come and visit me now. 🙂 (4th floor nurses, I’m looking at you. All of you.)
On the last day of chemo, once I’m done, I will have the methotrexate lumbar puncture done one last time. (This is where they send chemo through my spine to my brain to hopefully prevent the cancer coming back in my nervous system.) I will also have a procedure done to put in something called a trifusion line (or triple cumin). Remember when I got the port put in on the left side, just below my collarbone? Well the port got lonely, so we thought we’d give it a friend on the right side. Port, meet Trifusion Line (TL). I’m sure they’ll be BFF soon. The port is barely noticeable. You can tell where it is because the area is a little raised, but it’s not super eye-catching. The TL is a different story. Part of it is under the skin…and then there are three wires that will be sticking out. Sounds pretty, huh? I should be looking good for summer. Maybe a little alien-ish.
Here are some diagrams I saw that help you understand the placement of the Power Port and the Trifusion Line. Both diagrams obviously show the placement on the right side. I have my port on the left side and will have the TL on the right. But, you get the picture.
Thanks to Google, I was even able to find an actual picture of each device once it has been implanted. And no, neither of these pictures are actually of me.
So after the chemo and Trifusion Line placement, I’ll go home, and Saturday will be a “rest day”. Then beginning on Sunday, and for the following 9 days, I will go to MCD to get a Neupogen shot to help boost my white cell count. I received these injections three days in a row after an early round of chemo. After just the three injections, I thought I had been run over by a truck. My bones hurt. So I imagine that getting these shots 10 days in a row should be fabulous. I imagine I’ll enjoy myself quite a bit. Heck, maybe I’ll feel so good, I’ll go for a run!
During the 10 days of injections, they will be doing blood tests to track the white cell (can be used interchangeably with stem cell) count. For the first few days, the numbers will fall…but then they start to go back up. They will track the numbers each day so that when the numbers go back up, it will be time for the “collection” part of the process. The white cells typically begin to go back up around day 14.
For the “collection”, I’ll go in around 6:30 that morning. They will use the Trifusion Line to collect the bone marrow. The process typically takes about 4 hours. Dr. Matthews needs approximately 5 million (yes, you read that right…5 MILLION) stem cells. I’ll leave after the four hours and they will take the next several hours to count the stem cells they retrieved. They will call afterward and let me know if they were able to get the 5 million, or of I need to come back the next day and go through the same process until they get enough. He said that most of the time they are able to get all 5 million in one sitting. Let’s hope that’s the case. I’d rather not have this party two days in a row. Once they have what they need, they will harvest it.
Then, about two weeks after the collection (which is about 4 weeks after the start of Round 6 of chemo), we begin the long part of the actual transplant process.
I will be admitted to the hospital and receive 6 days of chemo (yes, again). But this time, it is what’s called a BEAM treatment. I mentioned this in the last post I did about Dr. Matthews. He referred to it as the chemo that is about 10 times as strong as the chemo I’ve been received. Well fabulous! This party just keeps getting better! I’m just giddy with excitement and counting down the days until it starts. (Who’s bringing the margarita machine?)
The BEAM treatment sounds rather terrifying, but maybe I’m just being negative. Essentially, it (the chemo) goes in and eradicates everything, good and bad. It’s not picky. It wipes out good cells, bad cells, and everything in between. After the 6 days of that
party treatment, I get two days to rest! Yay me! Then, the following day, they will take the harvested stem cells and put them back in through the Trifusion Line. So by now we’re going on about 9 days of being in the hospital…from the beginning of the BEAM treatment chemo to putting the new stem cells back in. Let’s keep track of how many days this hospital staycation is going to last. (We’re at 9 so far.)
The new cells typically take about 2 weeks to mature. (So that’s 9 days, plus at minimum 2 weeks…I’m no mathematician, but so far we’re at 23 days. 23 days in the hospital. In the same room. Looking at the same walls. Hooray! Sign.me.up.
During the two weeks while the new cells are maturing, I will be receiving blood transfusion pretty consistently throughout.
Then he got to the good stuff…the side effects. The bone marrow transplant can effect your GI tract, abdominal cramping, diarrhea (ew, yuck), mouth ulcers (more on this in a minute), extreme fatigue, and taste. So if you’re not jealous by now, you totally should be.
He talked about the mouth ulcers quite a bit. He said this is usually the worst part. He mentioned that they will probably get so bad that I won’t be able to eat for a bit. (That’s what happened this past week, but the sores were in my throat…so now, let’s just move ’em to my mouth.) He did that say I would have a pain pump to hopefully help control the pain of the sores.
And then guess what? By day 14 (after receiving the new cells), I should start feeling better! I’m sure at the time it will feel like it has been 14 weeks…but, we’ll make it.
We figured out that I’ll be in the hospital for a minimum of 23 days. That’s assuming everything goes perfectly, no set backs. It sounds like it could easily be a little longer. Either way, once I’m released, I’ll go back to Dr. Matthews two days a week for four weeks.
30 days after the transplant, I’ll have a PET scan to give us a baseline for upcoming scans. Then, I’ll have a PET scan every 3 months going forward…for at least a year.
Once all of the treatment and everything is done, there’s a chance that I will be put on a chemo pill as maintenance. Of course, the first thing I thought was, “Oh man, as long as I’m on that pill, my hair will continue to be gone.” He assured me that the pill will not affect my hair. My hair should grow back starting about 3 months after the transplant. Fingers crossed. Although now, I’m really nervous about it growing back and looking crazy. I’m assuming the first few months it’s growing back, it will look a little goofy. Maybe I’ll play with some wigs.
At this point in the appointment, I was feeling pretty good about things because I felt like we were really connecting with him. He gave me hope. He is absolutely one of the most brilliant people I have ever met. And he is so incredibly good at what he does. He just radiate intelligence. We laughed and joked…but we also made a plan. A plan that is pretty overwhelming and also rather scary, in my opinion. But, I’m in good hands. (There were no tears, for the record. Look at me, being a big girl and stuff.)
As we were finishing up, he told us a few more things that caught my attention. He said that if we stopped everything after the chemo regimen that I have been on, my chances of being “cured” are about 15%. (Remember, I have lymphoma…but I also have what’s called a double hit, which makes it much more aggressive and harder to keep away.) By going through with the bone marrow transplant, my chances of being “cured” go up to about 70%. That’s a big jump…and it’s a jump that I’m willing to take. It sounds like a wild ride we’re about to embark on…but I’m praying like crazy it will be worth it.
He also shared that the risk of relapsing is greatest within the first year. And that people who tend to relapse are the same people who did not have a complete response with chemo. (I had a complete response, WOOT WOOT!)
So, here’s a quick summary/timeline of our next steps…
-Approval for Organ Testing (ASAP)
-Organ Testing (Hopefully week of March 13)
-Approval for Collection and Transplant (Hopefully within 2 weeks.)
-Round 6 chemo, 1 rest day (March 27-April 1)
-10 days of Neupogen injections/blood work (April 2-11)
-Collection (Once White Cell count goes up)
-6 days of BEAM Chemo treatment, 2 rest days (Approximately 2 weeks after collection)
-Transplant (Day after 2 rest days)
-Cell maturation process (At least 2 weeks)
-Meet with Matthews 2 days each week for 4 weeks
-PET scan (30 days post transplant, then every 3 months)
And that, my friends, is the plan. I’m currently at peace with the way things are going. I’m eternally grateful that the cancer has responded the way it has. I believe that happened because I have incredible doctors, but also because people have stormed the heavens with prayers…and I will be forever grateful for each and every prayer.
P.S. I had heard stories about how people who go through bone marrow transplants are completely quarantined, can’t have any visitors, etc. We asked Dr. Matthews about this and he said that whereas he is typically pretty strict with things, all of that depends on the doctor, hospital, type of disease, type of transplant, etc. He said that I will be allowed to have visitors (probably not a lot, because it sounds like I’ll be feeling pretty rotten for more of the time in the hospital). He also said that I could have someone stay with me at night if I wanted to. (To be honest, I wasn’t too excited about spending a month in the hospital completely by myself. Don’t get me wrong, I love time by myself…but that’s a whole lot of time alone.)
The best part of everything…he said that my sweet babies could come up once (maybe twice)
if I was really missing them. He said that we would just need to let them know when they were coming and the nurses would check them out for any infections, possible illnesses, etc…and if they were okay, they would be able to come in for a bit. It’s not much…but it makes the thought of not seeing them for a month a little more doable. That’s still a whole lot of time without that and that breaks my heart. But I’ll take a month without them is that means I get a lifetime with them once this is all over.