We've got a lot to cover folks! So much has happened since my last blog post to today that I don't even really know where to begin. It's actually a tad bit overwhelming when I think about it all. It seems like the only real logical way of going about this post is to start from day 1 of the work up tests, and work our way to what's current and new. I hope you're in the reading mood because this blog entry is going to be quite the long one.
Wednesday - 5/16 - Work up day 1
Wednesday morning started off on the Bone Marrow Transplant floor (BMT) where the nurse started off with the usual vitals check, and then it was off to the lab to have some blood drawn. I should cross out the word "some" and replace with A LOT. There was a lot of blood drawn this day - 19 vials to be exact! That'd be a personal record for me. When I saw the nurse come back with piles of vials in both hands along with in her pockets, my first response was, "whoa! are those all for me?" and her response was, "yep! don't worry though. It looks way more impressive than it really is." In total, it's still way less than if you were to give blood. Either way, she said I shouldn't feel any different, and she was right. I survived the blood draw.
Next it was off to a room to have an EKG done. It was the quickest test ever! I wish I could say that they were all this way. The longest part was when the nurse was placing all the electrodes on my chest, legs and back. Once he got the machine running it was literally 30 seconds and we were done. Once the EKG was done, mom and I headed down to the cafeteria to grab a little something to eat since we had an hour before the next procedure which was a chest x-ray and bone scan injection. They only needed a couple chest x-rays so that part was quick. The bone scan injection wasn't painful by any means even though the name suggests otherwise. Basically I was given an injection of radioactive sustance also known as a tracer into my port. Since the tracer has to travel from the blood stream and into the bones, there is a bit of a waiting period before the scan itself can be done. I think we had a good 2 1/2 hours to burn before I could go back in for the scan that took 20 minutes give or take. Mom and I had fun bumming around the cute little gift shop right across the hall for a while and then we noticed there were a couple open computers right in the waiting room that had internet access so we managed to waste a good amount of time playing on FB and what not. Next thing I knew I was being called back for my bone scan. Once that was done I was free to go for the day.
Thursday - 5/17
Mom and I arrived bright and early on Thursday for an 8 AM MUGA appointment. If you remember, this is the one to check the heart as sometimes the chemo drugs can cause the heart muscles to weaken. I've had this test done a couple of times, and it went smoothly. This time was no different although I started getting nervous when a couple other doctors came in to view the scans that were popping up. I couldn't tell what they were saying but they looked concerned and were pointing at the screen which instantly made me nervous. What could they possibly be looking at? Was everything ok? I started getting almost panicky, and my heart started to race a bit. Why were all these people in the room if everything was looking normal? Thankfully my heart test ended up coming back just fine. The report came back saying that my spleen appears to be "significantly enlarged" though which must be what the doctors were looking at. The following Wednesday when we met with Dr. McClune, he had me lay on the exam bed and pushed and poked all over that spot and just couldn't feel where they came to their conclusion, but said he'd keep it on his radar in case anything changed.
Now lets talk about this lovely bone marrow biopsy, shall we? Let's just say, it was pretty awful. There is just no way of me sugar-coating this one. I had a bone marrow biopsy done in August of last year after getting my diagnosis, but that was nothing compared to this time around. They gave me lots of morphine and something extra for sedation, and it was still quite the painful experience. My mom was in the room for this procedure and she stayed up by my head the whole time. Anytime I'd hold my breath, take deep breaths, or make any noise, she'd mimic me. At one point when the pain got really bad I started saying, "owwie owwie owwie owwie owwie" (What am I 3?? Who says owwie?) and then she started up so there her and I are saying "owwie" together! Later on I asked her if she realized she was doing that, and she had no idea! It was like she was in the zone and any pain I was experiencing, she was as well just in a different way.
The procedure itself went something like this - I laid down on my stomach, and next thing I know my pants are half way down my butt just like I remember the last time. Then the doctor lifted my shirt a tad to get it out of the way and noticed the tattoo I got during my freshmen year of college on my lower back. I believe it's called a "tramp stamp" these days. Sound familiar? I know they didn't call it that when I was getting mine otherwise I would have maybe put it somewhere else on my body. Tramp stamp is just not nice! Nor, am I a tramp thank you very much! Of course then the female doctor started asking about the tattoo and next thing you know my mom is putting her 2 cents in about how she noticed it when I came home from college one weekend. What is my tattoo of you ask? It's a Japanese symbol that stands for happiness and good luck, and my mom's favorite line to use is, "it stands for your mother is really going to hate this!" I'm so glad these ladies were having a good time right before I'm about to get my bum drilled into!
Since my bare butt was exposed the doctor gave me a little spanking because I got the tattoo without my mom's consent! Can you believe her? I'm a good sport about it all, but hopefully she's not going around spanking everyone's hineys otherwise I could see that as being a bit problematic for some. Just saying...
So anyways after all that fun was had, she went straight to work attempting to numb up both sides of the hip. That was quite painful just because she really had to get down there with the needle. She started on the left side where the bone sample needed to come from. I must say, it's quite disgusting really when you can feel something resembling a small hammer or screwdriver making a direct connection with your bone, and as she was trying to get that bone fragment, all you could hear is this clunk clunk clunk sound. Yes, that'd be my bone you're cracking into lady! I really don't know why they felt another biopsy was needed as the cancer never showed up in my bones, but whatever I guess! I'm not the doctor here so what do I know?
Friday - 5/18
Friday started off with a lot of information right out the gate. We met in the Donor Center in the Phillips Wangensteen Building where it was to discuss the transplant itself, where it's done, how it works, and we even got a tour of where the stem cells are collected. The machine was overwhelming with all the lines and various bags used for collecting the cells in. From what we were told, every person is different in the amount of days it takes for the appropriate amount of cells to be collected. Best case scenario is that all the cells will be collected in 1 day. Worst case is it could take up to 7. It'd be rare if it took that long, but it's a possibility so they like to inform people up front in case it works out that way. Fair enough.
The next appointment on the schedule for Friday was the Pulmonary Function test. I've had a couple of these before and it was a breeze, so needless to say I was a bit nervous when I was told that they first wanted to get blood from the radial artery in the wrist. All I can say is OUCH. I was able to find a picture of what the procedure is. Some would classify this as torture.
The first time they tried, no blood came out. The artery was literally spasming up causing it to not let any blood through. You may be wondering (as I was) what exactly the purpose of this procedure was. What I was told is that they needed to do an Arterial Blood Gas analysis before the actual pulmonary (lung) function test to measure the amounts of oxygen and carbon
dioxide and the pH of an arterial blood sample. Understand any of that? Nope? They said that they like to have this work up done as part of the testing but if I decided to opt out, I could and it wouldn't stop me from moving forward with the transplant. I decided to give them one last try but if the same thing happened, I was going to put the kabosh on it because it was uncomfortable, painful, and I still didn't see why this procedure was a must do kind of thing even after they attempted to describe it to me. Sure enough, the artery started spasming again, and that was the end of that! I was done! By this point I had developed the cold sweats and was starting to get a little light-headed. It was time to move on to the pulmonary lung function test, which went great! I was in all the normal ranges and the tech said there was no need to worry with the results.
The last step for the day was to meet with the nurse coordinator and pharmacist to go over anything and everything related to the procedure, potential risks involved, and most importantly the time line of when everything was going to go down. I was completely overwhelmed with this meeting. I went in there thinking I knew what we were looking at already - I'd go in for the transplant, stay at the hospital a week or until they felt comfortable with me leaving, and that'd be the end of it. I was mistaken indeed! Nancy came strolling in with a massive binder containing everything I'd need to know for what was about to happen. There were a couple different routes they were thinking of sending me down. The first one being the "Growth Factor Primed" which would essentially mean I'd go in to the hospital everyday for a week to get a growth factor shot that'd boost my cells so that on the last day we could start with the stem cell collection. Once all the cells are collected, it'd be time to be admitted into the hospital for a week essentially to receive some hefty chemo that I've never had up to this point - chemo typically used for Leukemia patients. Once the chemo portion is done, I'd get a couple days of rest, receive the transplant where my cells are replaced into my body, and then get sent on my merry way assuming I'm not running a fever, have an infection, or unable to keep food down. I'll still need to come back daily for a week afterwards to receive more growth factor shots and so the nurse can get blood draws and watch my counts plummet down and come back up again.
The second option is the "Chemo Primed" which means all the steps listed above, but going through another round of the ICE chemo first to get everything started. The process is a little longer going the route of the chemo priming, but worth it being how well these last stubborn cells responded to ICE when I had the 2 previous rounds of it. This is actually the route that Dr. McClune did end up deciding on. It can't hurt to really hit it before everything else starts up. In fact, as we speak I'm currently in the hospital now finishing up with chemo for the night, and then back at it in the morning. I've been here since Friday and should be released on Monday hopefully around noon. The weather has been pretty crummy this weekend, and I actually don't mind it. If I'm going to be stuck in a hospital bed, I'd rather not have it be gorgeous outside so I feel like I'm missing out. Anyways, after the appointment with Nancy and the pharmacist, it was time to head home for the weekend. I even had Monday off. Aren't I lucky? I spent some of this time off reading up on all the information that was given to us. There was A LOT to know, and I wanted to be somewhat knowledgeable before starting back up again on Tuesday.
Tuesday - 5/22
Tuesday started off at 9 AM meeting Dawn in Radiation Therapy for a consultation on potential radiation once the stem cell transplant is all said and done. Going into this appointment, we believed that only 1 round of radiation would be all that was needed, and all of a sudden she spouts off that it could be every day for 3 weeks. My mouth just about hit the floor. 3 weeks?! Are you freakin' kidding me right now? She could tell that we were obviously NOT on the same page, and at this point in time, we don't even really know where we sit with the radiation portion. I'm hoping that 3 weeks is not going to be a part of my plan. It'd put me at a much greater risk for developing breast cancer down the line (like I need that!) not to mention, it could cause some heart and lung issues being where the mass is located in the chest. In the end, we all agreed that we'll put this conversation on hold and revisit once the stem cell transplant is done, and they've had a chance to re-stage the cancer. Please pray that if any radiation will be needed in the end that it's very minimal.
From the consultation, Josh and I met with one of the social workers on the BMT floor to discuss our emotional states of mind, potential grants out there that we may qualify for, and to basically make sure that we're in a good place (or as good of a place a person going through something like this can be in). Thankfully I have rocking health insurance so we haven't really run into any issues medical bill wise, and for that I'm soooo blessed! As if trying to work through a cancer battle isn't enough, but wondering how the bills are going to be paid on top of it - I just can't imagine.
The afternoon appointment we had after meeting with the social worker was with the growth factor and line care instructor. Her job is to show you how to take care of the central line I had placed in my chest this Friday, how to go about cleaning the line, and also flushing it with Heparin to prevent any blood clotting from occurring. She also mentioned that once I quit coming into the hospital every day after the transplant, that I'd actually be sent home with growth hormone shots to give to myself right in the gut. This makes me a little nervous, so I'm hoping Josh will be able to assist with this one. He feels like he's qualified for the job because he used to give sheep their shots on the hobby farm he grew up on. Funny man that Josh Madson guy is comparing his wife to sheep! I hope we don't forget all these helpful tips that we learned in this class before we have to start doing this on our own. Thankfully she gave me lots of information and step-by-step directions that I have since added to the binder.
Wednesday - 5/23 - "Close Appointment"
Josh and I had a line consult appointment at 11 AM this day to see an example of what the central line would look like that'd be inserted into my chest, what each "pigtail" is used for, how to take care of it (review from the day before), and a chance to ask any questions we had. Being that this would be yet another thing being inserted into my chest like the port, which also means more scars for the world to see I really wanted a say in where it was positioned. I understood that my port just wasn't going to cut it being that they need one of the lines for the blood/cell collection, and other for medications, but I wanted to make sure that they could put it as close to my bra strap line as possible to at least attempt to hide it. Unlike the port which is completely under the skin, this one sticks straight out of my chest and will stay that way for a good month after everything is complete. When I was mentioning my concern to the male doctors, they looked at me like, "what's the big deal lady?" but it is a big deal! I'm a lady, I like to wear shirts with different necklines other than turtle necks everywhere I go! Can you blame me? I know you ladies can understand where I'm coming from. I had Josh take a picture of me this morning right as the nurse was changing my dressing on the central line for the first time. It was just placed yesterday so it's still swollen and a tad painful but I'm getting through it.
Since they were changing the dressing for the first time, I was required to wear a mask as more of a precautionary than anything else. You just can't be too careful. As you can see though, those "pigtails" hanging out with the red and blue clamps are unfortunately going to be hanging out the entire time. It should be a real treat finding summery tops that I can wear that will hide both my port and now this central line. You can also see where they fished the tubing through my neck. It's hard to miss that bulge, but I'm hoping that'll shrink with time once the swelling goes down. Either that or I'll have to invest in some really cute necklaces to cover it up!
In closing on my weeks worth of testing, Josh, Dr. McClune, and I all met to go over the results of everything. Thankfully I PASSED all that was required of me! Besides the enlarged spleen, everything looked pretty darn good. I found out that my blood type is O Negative, but that doesn't mean much being that I can't give blood. If anything, I'll be the recipient of the blood from others through transfusions I will need to be given from time to time. I also found out that apparently my diaphram sits a bit off kilter with one side sitting higher up than the other. He said that it could be the way my organs are positioned, or it could simply be a genetic thing. Nothing to worry about though. He was also able to see from the tests that I've had mono before - something I could have told him. I'm just glad there were no major surprises with this and that we could go ahead and move forward with the chemo priming portion of the process. One step closer to transplant!
Speaking of the transplant I wanted to share some news with you because it weighs so heavily on my heart. Yesterday Josh and I got the rug pulled out from underneath us yet again, but this time from a female nurse specializing in reproductive health. Josh had just packed up his bag to take off for the evening as his plan was to sleep at home and come back in the morning. I'm glad he was still here when the nurse came in to have this chat because it was a tough pill to swallow. She started off by introducing herself, asked how I was feeling, and was wondering if there was anything she could assist me with. I thought it was somewhat strange. What was this woman trying to get at? She then went on to ask if anyone has spoken about what a stem cell transplant does to a woman's fertility, and I said, "what I've heard is that there is a chance of becoming infertile but that many women go on to having healthy babies of their own so we're holding on to that as hope for us." Both Dr. Londer and Dr. McClune knows of Josh and my desire to have kids when this is all said and done, but we never really had THE TALK about how long after transplant could we start trying again and what not. I think they're just focused strictly on getting me healthy and curing this cancer, which IS #1. I just wish I would have known what I could honestly expect when this is all said and done. This nurse made it quite clear that after my transplant, the chances of becoming pregnant on my own are in the single digits percentage wise. Wait...what!? No really...WHAT DID SHE JUST SAY!? If I got pregnant, she said I'd definitely be in the minority, and that women typically become infertile after transplant. I clearly caught her off guard when I started to instantly cry. I sat there for quite some time with my hands over my eyes just sobbing. I couldn't hold back the tears and still can't just thinking about that conversation. My heart was literally breaking into tiny little pieces. Dreams crushed.
I've dreamt about that day since I was a little girl playing with my cabbage patch dolls. I don't see my life without having a couple little ones running around. It's what makes me happy, and our goal through all of this has been to get back on the baby train once given the green light after transplant. I've wanted this for so long so to have some woman waltz into my room to tell me I can expect to be infertile after transplant, and then leave as quickly as she came in only to say, "well we didn't mean to make you cry but try to have a nice rest of your day" all I wanted to do was smack that smile off her face. I know that doesn't sound very nice, but in that moment I was angry and just truly devastated down to the core. Josh and I now have an appointment with the Reproductive Medicine Center next week to see if there is anything we can do between now and when the transplant occurs to better my odds of becoming pregnant when this is all said and done. My nurse also decided to put me on birth control pills that I will take continuously to suppress my periods while going through transplant. I guess this will be better for my reproductive organs. I'm praying for a miracle at this moment. Miracles do happen, and I just have to keep the faith. The stats can show all they want, but when it comes down to it God has a master plan for us all so if I'm meant to have a biological child or children of my own then it'll happen. If not, we will seek other options such as adoption. I'm feeling defeated today, but in my heart I know that Josh and I will be parents some day, and if our road is adoption, then so be it. That child will never be looked at as being adopted in our eyes. He/she will be our son or our daughter, and will be loved unconditionally to the moon and back.
We could really use your thoughts and prayers as we jump through all these hurdles that lie before us. Also please pray that there won't be anymore negative surprises coming our way anytime soon. I just don't know if my heart can take much more.
Love to you all ~ xoxo
