I wish I could say that there wasn't at least one more ER trip made since my last post, but I'd be lying. Last Saturday marked trip #4, but thankfully I've been good ever since! (knock on wood). Thanks to a couple doctors giving me some helpful tips I think I'm finally back on track to recovery. So this is what it feels like to go an entire week without puking my guts out. Weird!!
I've been continuing to make daily appearances over at the U for my IV meds, and I have good news! Not only is tomorrow finally my last day for the IV meds meaning no appointments until Wednesday, but none of my blood cultures have come back positive meaning this bacterial/blood infection appears to be all cleared up. Now if I could only get this blood clot situation under control - ugh! Yes, you read that correctly. I now have a blood clot that showed up on a CT scan I just had on Friday, 7/20. It's always something, isn't it? According to the interpreter, they think it's "likely chronic non-occlusive thrombus". My response is, "chronic whaaaa?!". First of all I would like to know what makes this lady think this is chronic being that this scan is the first to show any sort of clot up to this point. Maybe she's saying this issue will be chronic going forward and that I'll need to be on blood thinners the rest of my life? Who knows!
Dr. McClune suspects that this clot is probably from my central line as it's on the left side in a vein near my heart (scary, right!?). I was told that this is fairly common by more than one health care professional, but I still don't have warm fuzzies about the situation, especially knowing that it's possible for it to travel to my lungs creating a pulmonary embolism. I'm sure you're thinking what I'm thinking which is that this seems pretty serious but nobody seems overly concerned - except for me! Dr. McClune said he'd be consulting with a clotting specialist to see if they want to start me on some anticoagulants, helping to break up the clot, but I haven't heard anything back yet. Not a peep. You best believe the nurse coordinator will be getting a call Monday morning to push this subject along. I'd like to work out, but am so afraid of what this clot is/is not doing in my body that I don't dare. I never asked the doctor if this clot inhibits any sort of physical activity. Me being the big freak-a-zoid I am has a hard time sleeping at night now wondering if this clot is going to give my a heart attack in my sleep or is moving its way to one of my lungs as we speak! Oh good Lord - Please give me some peace regarding this matter. I'll feel so much better once I get some answers and know what the plan is for resolution.
Besides the clot discussion, I found out that the last bone marrow biopsy I had done which was also on 7/20 came back clean. This comes as no surprise to me. I've never had any involvement in my bone marrow to begin with, but they still needed to make sure that the marrow looked good and that no secondary cancer appeared to be forming which can sometimes happen post transplant. Can you imagine? You just get done with a stem cell transplant, only to be told that a new cancer is forming? Nothing about this is OK. Cancer patients (and their caregivers) go through SO MUCH. We need to find a cure to this nasty disease already! Too many peoples lives are changed every single day by the big "C" and are never quite the same.
I met with the radiation department at the U a second time this past Monday, and they sang the same tune as before which is that they're recommending 4 weeks of solid treatment Monday through Friday which they refer to as, "consolidated radiation". Because the size of my mass is still larger than 2 cm, this is their protocol. In talking with Dr. McClune about the concerns we have not only with the lenth of treatment, but with the department itself he advised us to get a second opinion outside of the U/Fairview system. We were planning on doing that anyways, but it sealed the deal after talking with him. I never planned on going to the U for any radiation therapy anyways as both Hubert Humphrey and North Memorial Maple Grove are considerably closer, not to mention I'd be closer to Dr. Londer if we did everything at Hubert Humphrey. If we go in and and find out that 4 weeks of treatment is the general protocol across the map then I won't argue. I do worry though about the greater risks for breast cancer, along with the negative effects on my heart and lungs. As with everything else though we'll take this one day at a time.
Saturday, July 28, 2012
Wednesday, July 18, 2012
Hasta la vista, Port! Its been real.
The past few weeks have been interesting to say the least. As you're well aware by now, I've been experiencing "bouts" of nausea on and off since...well...lets go with FOREVER because that's what it feels like some days (I know I'm just being dramatic now).
Starting on Friday the 6th the nauseousness really picked up which eventually lead to an almighty puke-athon. The only difference this time vs. other times when my stomach has been upset is that once I started throwing up, I couldn't stop. Every 10-15 minutes I was running to the bathroom or using the bucket I eventually just started leaving on the floor next to my side of the bed. My legs were starting to feel like jell-o, and I could just tell I was becoming weaker by the minute and becoming slightly light-headed. It was time to take action and head to the ER. Food wasn't staying down nor were the anti-nausea meds that I was prescribed. I have to tell you, I felt like a million bucks when we left the ER that evening. All my body needed was some fluids to rehydrate, and Zofran via IV to calm down the upset stomach. Thankfully this works because I've made 2 additional trips since - Friday the 13th, and just yesterday. Can I just say, not only am I tired of throwing my guts up, but I'm tired of hanging out in hospitals!! It's sad when you actually become comfortable though being in a hospital as if it's a second home.
These last 2 times I've ended up in the ER have been quite bad - worse than the first time even. These times included stomach cramping/muscle spasms that wrapped around my sides and back. It was like my muscles were trying to squeeze the life right out of me. It really did take my breath away, and I had to really concentrate on taking over-exaggerated deep breaths just to force myself to calm down the best I could. The second time around (on the 13th) we ended up needing to drive to the U so I could be admitted into the hospital. I had to have 2 peripheral lines put into my hand (can we say OUCH!?), and all sorts of testing was done on me to see if they could figure out what was causing these terrible GI issues. Of course all the tests came back negative for this, that, and the other, but it didn't stop them from keeping me until Sunday for observation. Fun weekend, right? Since I was already admitted, and they already knew about this bacterial infection I was being treated for, they decided it was time to say, "bye bye" to my port that I've had since last August. Any and all plastic "hardware" needed to come out as the infection has a tendency to attach itself to plastic, which is what my line and port are made out of.
In the beginning I absolutely hated this port, and I was sort of sad in a way to see it go because it has become a part of me, and has been with me through this whole Lymphoma journey. It was my main line for receiving all the healing juices that have been pumped into my body up until the central line, and has saved me from dozens of needle pokes to the arm for which I'm grateful. It was very bittersweet to say the least, but now I'm glad it's gone. I no longer have things sticking out of my chest, and am starting to feel like a normal person again! I must have had some good conversations while being slightly sedated in the OR because I left the room with a hand-written Zumba schedule in my hand from one of the male physician assistants for a couple places in Minneapolis, along with class prices. I do even remember fist pumping to a song that came on the radio, and saying "I'm liking the song!". I'm going to guess that this is how the Zumba conversation originated.
Yesterday I could just tell it was all starting up again, and no amount of anti-nausea medication was going to stop this train. Just like the time before I went from 0 to awful in a matter of 20 minutes. It was about 4 pm, and I knew it was going to be a later evening for Josh at work so my game plan was to call my mom to see if she'd swing by after work to hang with me, or bring me to the ER if needed. After puking my guts out every 5 minutes I grabbed my phone and realized I missed a call from her. It was like she knew something was up. I called her right back and she offered to come right over. I'm so glad she did because I needed to get to the ER, and was in no shape to drive myself. In just the hour and a half (the time it started to leaving for the hospital) of toilet hugging my legs were already wobbly, my arm muscles shaking uncontrollably, and by this point I wasn't even throwing up bile anymore - It was foam. We didn't wait as long to head to the ER as the times before because I knew how this all rolled out, and I knew the sooner I could get in, the sooner there'd be relief. This was after all round 3 of this nonsense.
When we got to the emergency room, all the rooms were occupied so we waited. And waited. And waited some more. I'm sure we weren't in the waiting room that long, but to me it felt like an eternity. It was torture. Josh eventually made his way over to the hospital so the 3 amigos were reunited to battle the beast also known as my gut. Even though I felt terrible, I had both Josh and my mom there every step of the way to ease a little of the anxiety of the whole ordeal. My mom even sat in the hospital rest room with me every time I did my "business" as we waited for a bed to open up while Josh sat in the waiting room watching our purses. She was so afraid that I'd faint in the bathroom, or fall and hit my head that she wanted to be in there. Sorry you had to experience that mom! I'm glad she was with me though because the last time we were walking back to the waiting room from the bathroom I almost passed out. If she wasn't there holding my arm I would have taken a digger without a doubt. Between the wobbly legs and everything going black who knows what I would have smashed into! My guess is the couple of wheelchairs that were sitting against the window. I'm guessing that would have hurt just a tad.
When Josh saw what almost happened he ran over and grabbed my other arm and between the 2 of them they were able to get me over to the corner spot where we were sitting, and at this point I decided I was going to lay on the floor. It was carpeted so I wasn't too concerned. It just felt so much better than sitting upright in an uncomfortable chair and eased my stomach a bit. Whatever it was - my mom yelling at the check-in nurse that they were "about to have a real medical emergency on their hands" due to me almost face-planting it in the waiting room, me laying on the ground, or them just not wanting to hear us complain any longer, we were able to get set up with a bed in one of the triage rooms where both the fluids and zofran started while we continued to wait for a room to open up. I was already starting to come around within the first 5 minutes, and after an hour or so was feeling pretty darn good besides being thirsty and starving.
I've been going into the clinic every single day for these IV meds, so I was able to get squeezed into one of the providers schedules so that we could discuss these issues. What he recommended for me was to get one round of Dexamethasone (I received today) which is a steroid and anti-nausea medication that lasts around 5 days in the system, along with taking one dose of disolvable zofran (unable to throw up) daily for 7-10 days whether I'm feeling sick or not. He also took away one of my meds and cut down another one from 5 times a day to 3 as I guess this particular medication can cause some GI issues as well. I'm hopeful that these changes will be my ticket to a (cross my fingers) puke-free future.
Starting on Friday the 6th the nauseousness really picked up which eventually lead to an almighty puke-athon. The only difference this time vs. other times when my stomach has been upset is that once I started throwing up, I couldn't stop. Every 10-15 minutes I was running to the bathroom or using the bucket I eventually just started leaving on the floor next to my side of the bed. My legs were starting to feel like jell-o, and I could just tell I was becoming weaker by the minute and becoming slightly light-headed. It was time to take action and head to the ER. Food wasn't staying down nor were the anti-nausea meds that I was prescribed. I have to tell you, I felt like a million bucks when we left the ER that evening. All my body needed was some fluids to rehydrate, and Zofran via IV to calm down the upset stomach. Thankfully this works because I've made 2 additional trips since - Friday the 13th, and just yesterday. Can I just say, not only am I tired of throwing my guts up, but I'm tired of hanging out in hospitals!! It's sad when you actually become comfortable though being in a hospital as if it's a second home.
These last 2 times I've ended up in the ER have been quite bad - worse than the first time even. These times included stomach cramping/muscle spasms that wrapped around my sides and back. It was like my muscles were trying to squeeze the life right out of me. It really did take my breath away, and I had to really concentrate on taking over-exaggerated deep breaths just to force myself to calm down the best I could. The second time around (on the 13th) we ended up needing to drive to the U so I could be admitted into the hospital. I had to have 2 peripheral lines put into my hand (can we say OUCH!?), and all sorts of testing was done on me to see if they could figure out what was causing these terrible GI issues. Of course all the tests came back negative for this, that, and the other, but it didn't stop them from keeping me until Sunday for observation. Fun weekend, right? Since I was already admitted, and they already knew about this bacterial infection I was being treated for, they decided it was time to say, "bye bye" to my port that I've had since last August. Any and all plastic "hardware" needed to come out as the infection has a tendency to attach itself to plastic, which is what my line and port are made out of.
In the beginning I absolutely hated this port, and I was sort of sad in a way to see it go because it has become a part of me, and has been with me through this whole Lymphoma journey. It was my main line for receiving all the healing juices that have been pumped into my body up until the central line, and has saved me from dozens of needle pokes to the arm for which I'm grateful. It was very bittersweet to say the least, but now I'm glad it's gone. I no longer have things sticking out of my chest, and am starting to feel like a normal person again! I must have had some good conversations while being slightly sedated in the OR because I left the room with a hand-written Zumba schedule in my hand from one of the male physician assistants for a couple places in Minneapolis, along with class prices. I do even remember fist pumping to a song that came on the radio, and saying "I'm liking the song!". I'm going to guess that this is how the Zumba conversation originated.
Yesterday I could just tell it was all starting up again, and no amount of anti-nausea medication was going to stop this train. Just like the time before I went from 0 to awful in a matter of 20 minutes. It was about 4 pm, and I knew it was going to be a later evening for Josh at work so my game plan was to call my mom to see if she'd swing by after work to hang with me, or bring me to the ER if needed. After puking my guts out every 5 minutes I grabbed my phone and realized I missed a call from her. It was like she knew something was up. I called her right back and she offered to come right over. I'm so glad she did because I needed to get to the ER, and was in no shape to drive myself. In just the hour and a half (the time it started to leaving for the hospital) of toilet hugging my legs were already wobbly, my arm muscles shaking uncontrollably, and by this point I wasn't even throwing up bile anymore - It was foam. We didn't wait as long to head to the ER as the times before because I knew how this all rolled out, and I knew the sooner I could get in, the sooner there'd be relief. This was after all round 3 of this nonsense.
When we got to the emergency room, all the rooms were occupied so we waited. And waited. And waited some more. I'm sure we weren't in the waiting room that long, but to me it felt like an eternity. It was torture. Josh eventually made his way over to the hospital so the 3 amigos were reunited to battle the beast also known as my gut. Even though I felt terrible, I had both Josh and my mom there every step of the way to ease a little of the anxiety of the whole ordeal. My mom even sat in the hospital rest room with me every time I did my "business" as we waited for a bed to open up while Josh sat in the waiting room watching our purses. She was so afraid that I'd faint in the bathroom, or fall and hit my head that she wanted to be in there. Sorry you had to experience that mom! I'm glad she was with me though because the last time we were walking back to the waiting room from the bathroom I almost passed out. If she wasn't there holding my arm I would have taken a digger without a doubt. Between the wobbly legs and everything going black who knows what I would have smashed into! My guess is the couple of wheelchairs that were sitting against the window. I'm guessing that would have hurt just a tad.
When Josh saw what almost happened he ran over and grabbed my other arm and between the 2 of them they were able to get me over to the corner spot where we were sitting, and at this point I decided I was going to lay on the floor. It was carpeted so I wasn't too concerned. It just felt so much better than sitting upright in an uncomfortable chair and eased my stomach a bit. Whatever it was - my mom yelling at the check-in nurse that they were "about to have a real medical emergency on their hands" due to me almost face-planting it in the waiting room, me laying on the ground, or them just not wanting to hear us complain any longer, we were able to get set up with a bed in one of the triage rooms where both the fluids and zofran started while we continued to wait for a room to open up. I was already starting to come around within the first 5 minutes, and after an hour or so was feeling pretty darn good besides being thirsty and starving.
I've been going into the clinic every single day for these IV meds, so I was able to get squeezed into one of the providers schedules so that we could discuss these issues. What he recommended for me was to get one round of Dexamethasone (I received today) which is a steroid and anti-nausea medication that lasts around 5 days in the system, along with taking one dose of disolvable zofran (unable to throw up) daily for 7-10 days whether I'm feeling sick or not. He also took away one of my meds and cut down another one from 5 times a day to 3 as I guess this particular medication can cause some GI issues as well. I'm hopeful that these changes will be my ticket to a (cross my fingers) puke-free future.
Wednesday, July 11, 2012
Goodbye Central Line!
I had my central line removed this morning due to some positive blood cultures (lab work) showing a "slow moving" infection (fabulous!). The doctors aren't completely sure yet that the infection is coming from my central line, but being that the positive cultures were drawn from the lines, they're assuming this is where it's coming from. Just to be sure though, they've taken cultures daily from both catheter lines, and one morning I also had blood drawn from my port and vein (ouch!) all in the same visit. I've been spoiled having my port and central
line to get (painless) blood draws from that I've forgotten how much it hurts getting the ole' needle poke in the
arm!
I was experiencing fevers around the 4th of July which is what triggered the blood culture draws in the first place. I guess I can thank those fevers for helping to show this developing infection in my body, but now I'm on edge about the infection itself. I've been so good about not Google searching the stuff I've had going on to prevent any unnecessary anxiety, but made the mistake of searching central line infections today. Why oh why do I do this to myself? Thankfully the clinic started me up on IV meds right away to help fight off this infection, and I'll continue the medication for the next 10 days or so. To save me a daily trip into the U in rush hour every morning I've been given the option of having a home infusion nurse come tomorrow to show me how to administer the medication myself. It sounds like it should be pretty easy breezy, but if you know me you know that I can make just about anything more complicated than it really is so we'll see how it goes.
The removal of my central line was...interesting! I'm still slightly traumatized by the whole ordeal, but don't think it'll cause any permanent scarring. We arrived to the clinic this morning at 8 AM so that I could get the IV meds, and then it was off to the Gold Waiting Room to check in. We were done in the clinic around 9:15 and my procedure was scheduled for 10 AM so we were quite early, but thought maybe we'd get in a little early. Yeah...not so much. If anything, it was after 10 before I was called back. When I got back to the room I was given a fabulous hospital gown to change into, and then it was prep time before the physician assistant (PA) came in.
The prep nurse started up with the pre-surgical scrub (Betadine) that's used to prevent contamination and infection of the site, along with kill any bacteria. The Betadine comes out orange in color which makes a person look like they've just gotten a really bad spray tan. Either that, or they look like they're turning into an Oompa Loompa. Anyways, back to the procedure. Once I was all prepped, the PA came in and asked me if I was ready to go. This whole time I was wondering when they'd be giving me the sedative to help relax me and take the edge off like when the line was originally put in. I was quickly informed that no medication would be given during this procedure unless I was in pain, and then they could give me lidocaine (needle) shots to numb the area. We've already covered how I feel about needles, so I think you know how this played out.
First the stitches used to hold the line in place were cut out which I felt a bit, but it wasn't too bad. It was the next steps that grossed me out. The PA told me that he was going to pull on the line to loosen the scar tissue that has formed under the skin and around the line, and that it was going to hurt for a second. He did a count down of 3, 2, 1 and then pulled. There was some resistance and then along with the pain he spoke of, I heard a popping sound. This popping sound would be my central line being partially dislodged from the scar tissue (yum!). The PA asked me if I was ok at this point because my whole body was clenched up. My response was, "yep!" even though my face suggested otherwise, and I had the cold sweats. Just get this thing out already! He quickly pulled the rest of the line out, and it didn't necessarily hurt at this point. It was just a strange sensation. Immediately after he pulled the line out he applied instant pressure to my neck where the line was fished through the vein to stop the bleeding, giving my platelets a chance to clot. After 5 minutes or so he let up the pressure, took off his gloves, and off he went to his nextvictim patient. At this point I was able to get dressed, was given instructions to follow the next few days, and off we went on our merry way - drug free. What a morning!
I was experiencing fevers around the 4th of July which is what triggered the blood culture draws in the first place. I guess I can thank those fevers for helping to show this developing infection in my body, but now I'm on edge about the infection itself. I've been so good about not Google searching the stuff I've had going on to prevent any unnecessary anxiety, but made the mistake of searching central line infections today. Why oh why do I do this to myself? Thankfully the clinic started me up on IV meds right away to help fight off this infection, and I'll continue the medication for the next 10 days or so. To save me a daily trip into the U in rush hour every morning I've been given the option of having a home infusion nurse come tomorrow to show me how to administer the medication myself. It sounds like it should be pretty easy breezy, but if you know me you know that I can make just about anything more complicated than it really is so we'll see how it goes.
The removal of my central line was...interesting! I'm still slightly traumatized by the whole ordeal, but don't think it'll cause any permanent scarring. We arrived to the clinic this morning at 8 AM so that I could get the IV meds, and then it was off to the Gold Waiting Room to check in. We were done in the clinic around 9:15 and my procedure was scheduled for 10 AM so we were quite early, but thought maybe we'd get in a little early. Yeah...not so much. If anything, it was after 10 before I was called back. When I got back to the room I was given a fabulous hospital gown to change into, and then it was prep time before the physician assistant (PA) came in.
The prep nurse started up with the pre-surgical scrub (Betadine) that's used to prevent contamination and infection of the site, along with kill any bacteria. The Betadine comes out orange in color which makes a person look like they've just gotten a really bad spray tan. Either that, or they look like they're turning into an Oompa Loompa. Anyways, back to the procedure. Once I was all prepped, the PA came in and asked me if I was ready to go. This whole time I was wondering when they'd be giving me the sedative to help relax me and take the edge off like when the line was originally put in. I was quickly informed that no medication would be given during this procedure unless I was in pain, and then they could give me lidocaine (needle) shots to numb the area. We've already covered how I feel about needles, so I think you know how this played out.
First the stitches used to hold the line in place were cut out which I felt a bit, but it wasn't too bad. It was the next steps that grossed me out. The PA told me that he was going to pull on the line to loosen the scar tissue that has formed under the skin and around the line, and that it was going to hurt for a second. He did a count down of 3, 2, 1 and then pulled. There was some resistance and then along with the pain he spoke of, I heard a popping sound. This popping sound would be my central line being partially dislodged from the scar tissue (yum!). The PA asked me if I was ok at this point because my whole body was clenched up. My response was, "yep!" even though my face suggested otherwise, and I had the cold sweats. Just get this thing out already! He quickly pulled the rest of the line out, and it didn't necessarily hurt at this point. It was just a strange sensation. Immediately after he pulled the line out he applied instant pressure to my neck where the line was fished through the vein to stop the bleeding, giving my platelets a chance to clot. After 5 minutes or so he let up the pressure, took off his gloves, and off he went to his next
Wednesday, July 4, 2012
Getting back on my feet after transplant
Happy 4th everyone! I hope you enjoyed the beautiful (and very warm) day today, and did your best to stay cool. I stayed indoors and did a lot of napping! That's kind of my gig these days. I've been meaning to write a new blog entry for quite some time, but I just haven't really felt well until just a couple days ago. I guess better late than never right?
My stem cell transplant couldn't have gone any better. It was such a quick process once they hooked me up. Before they started, the doctor told me that I may taste/smell creamed corn due to the chemical they use to thaw out the cells which I thought was sort of funny - creamed corn out of all things! Sure enough though, the second the cells started dripping in, not only could I smell corn, but I could taste it too. I like corn and all, but after a while it was starting to turn my stomach because of how strong it was. Once I started chewing gum though all that went away, and I even started to get used to it after a while. I was told I smelled like corn the next couple days after transplant by my mom and Josh, but I guess I could have smelled like worse things!
I can't tell you how good it felt to leave the hospital. I couldn't wait to just get home, see my girls, and sleep in my own bed. You don't realize how awesome your own bed is until you've slept on a hospital bed with rubber pillows for 7 nights.
Josh was off on a much deserved guys weekend so my mom stayed over that first night. We spent the day lounging on the couches, watching girly movies on TV, and feasted on Buca di Beppo that my aunt Deb and uncle Kevin brought us (thanks again!). On Sunday morning I woke up with a sore throat, but felt pretty good otherwise. I thought that maybe I slept with my mouth open or the air was dry, causing the sore throat, but when I went into the clinic on Monday, they told me it was the start of Mucositis. I was warned about this pesky Mucositis in the hospital, and was just hoping it wouldn't get bad like the doctor said it could. Thankfully I ended up with a very mild case of it, but it still involved fevers between 100.1 and 100.6, sore gums, and canker sores. Even the front of my tongue was raw for about a week.
My everyday toothpaste was just too harsh on my mouth and I needed something a little milder so my mom went out on a mission - to find me some mild toothpaste. This is what she came back with... :)
She asked the pharmacist if he could help her find a toothpaste that would be more mild than what we had, and he kept telling her she needed to consult with a dentist so she took matters into her own hands. The funny thing about it all is that this toothpaste actually helped, and it no longer felt like my mouth was on fire when I'd brush my teeth. My mom is the best.
Now that I had the mouth sores/pain situation handled, next came the migraines - darn you, migraines! Oh, but not only did I get migraines, but apparently I've turned into a puker as well. My brother was always the one who'd throw up with bad headaches as a child, but not me! Apparently I am now the same way. I experienced migraines all last week that usually involved me hugging it out with a toilet or two, or in one instance a bucket in the clinic. Even Oxycodone wasn't doing the trick when they'd get to a certain point. My doctor contributes the migraines to my hormones being all out of wack due to the Lupron shots I was getting. Thankfully I only had to get the shots until this past Friday, and haven't experienced a migraine for a couple days now so hopefully we're over that hump too.
During all of this I've been continuing to go into the clinic bright and early every morning to have my lab work done, get the growth factor shot, see a physician, and also to get IV meds for this Mucositis, along with transfusions of platelets, red blood cells, or both if needed. When all of the above are needed, it can make for a long day - typically 5 hours. When only the IV meds are needed, I'm usually out of there in 2 hours. It's so hard to really plan how the day may go, so you just have to roll with it - anticipate being there 5 hours, and if we're out of there in 2 it's a bonus. My WBC's are really starting to take off. On Sunday they were .4, Monday they were 1.8, Tuesday they were 7.1, and today they were 14.7! We're getting there...
A picture of grandma & I from Tuesday :)
Today is day +11 since transplant, and a lot more will start to happen around day 30. On day 28 I will go in for a CT scan and one more bone marrow biopsy (ridiculous...I know). Also around this time, a lot of my pills I'm currently taking will start going away, I will be able to have my central line removed, and will have more freedom to be out and about amongst the masses without my mask as my immune system should be pretty darn good.
I can't wait to feel like myself again, and figure out what my new 'normal' will be. I have a lot to look forward to.
Thank you all for your continued thoughts and prayers, and a special thank you to those who came to visit me in the hospital! Love to you all!
My stem cell transplant couldn't have gone any better. It was such a quick process once they hooked me up. Before they started, the doctor told me that I may taste/smell creamed corn due to the chemical they use to thaw out the cells which I thought was sort of funny - creamed corn out of all things! Sure enough though, the second the cells started dripping in, not only could I smell corn, but I could taste it too. I like corn and all, but after a while it was starting to turn my stomach because of how strong it was. Once I started chewing gum though all that went away, and I even started to get used to it after a while. I was told I smelled like corn the next couple days after transplant by my mom and Josh, but I guess I could have smelled like worse things!
Here are a few pictures from the day...
Stem cell bag 1 of 3
Stem cell bag 1 of 3
A couple pictures with mom :)
Right after transplant I was feeling pretty darn good. I had more energy than I thought I'd have, but forced myself to lay low and rest. On Saturday (6/23) after being looked over, I was given the OK to be discharged. My dad arrived just before 11 to pick my mom and I up, and after the nurse showed her how to give me my daily Lupron shots (used to put my ovaries into an inactive state), we packed up and headed home. FREEDOM!!
You'd think we were going on vacation with all these bags...
The awesome Tootsie Pop bouquet from my friends Lora & Tim
Mom & I (all masked up) waiting for dad to pull up the truck
Home!
I can't tell you how good it felt to leave the hospital. I couldn't wait to just get home, see my girls, and sleep in my own bed. You don't realize how awesome your own bed is until you've slept on a hospital bed with rubber pillows for 7 nights.
Josh was off on a much deserved guys weekend so my mom stayed over that first night. We spent the day lounging on the couches, watching girly movies on TV, and feasted on Buca di Beppo that my aunt Deb and uncle Kevin brought us (thanks again!). On Sunday morning I woke up with a sore throat, but felt pretty good otherwise. I thought that maybe I slept with my mouth open or the air was dry, causing the sore throat, but when I went into the clinic on Monday, they told me it was the start of Mucositis. I was warned about this pesky Mucositis in the hospital, and was just hoping it wouldn't get bad like the doctor said it could. Thankfully I ended up with a very mild case of it, but it still involved fevers between 100.1 and 100.6, sore gums, and canker sores. Even the front of my tongue was raw for about a week.
My everyday toothpaste was just too harsh on my mouth and I needed something a little milder so my mom went out on a mission - to find me some mild toothpaste. This is what she came back with... :)
Thomas the Train Orajel for Toddlers - Tooty Fruity Flavor
She asked the pharmacist if he could help her find a toothpaste that would be more mild than what we had, and he kept telling her she needed to consult with a dentist so she took matters into her own hands. The funny thing about it all is that this toothpaste actually helped, and it no longer felt like my mouth was on fire when I'd brush my teeth. My mom is the best.
Now that I had the mouth sores/pain situation handled, next came the migraines - darn you, migraines! Oh, but not only did I get migraines, but apparently I've turned into a puker as well. My brother was always the one who'd throw up with bad headaches as a child, but not me! Apparently I am now the same way. I experienced migraines all last week that usually involved me hugging it out with a toilet or two, or in one instance a bucket in the clinic. Even Oxycodone wasn't doing the trick when they'd get to a certain point. My doctor contributes the migraines to my hormones being all out of wack due to the Lupron shots I was getting. Thankfully I only had to get the shots until this past Friday, and haven't experienced a migraine for a couple days now so hopefully we're over that hump too.
During all of this I've been continuing to go into the clinic bright and early every morning to have my lab work done, get the growth factor shot, see a physician, and also to get IV meds for this Mucositis, along with transfusions of platelets, red blood cells, or both if needed. When all of the above are needed, it can make for a long day - typically 5 hours. When only the IV meds are needed, I'm usually out of there in 2 hours. It's so hard to really plan how the day may go, so you just have to roll with it - anticipate being there 5 hours, and if we're out of there in 2 it's a bonus. My WBC's are really starting to take off. On Sunday they were .4, Monday they were 1.8, Tuesday they were 7.1, and today they were 14.7! We're getting there...
A picture of grandma & I from Tuesday :)
Today is day +11 since transplant, and a lot more will start to happen around day 30. On day 28 I will go in for a CT scan and one more bone marrow biopsy (ridiculous...I know). Also around this time, a lot of my pills I'm currently taking will start going away, I will be able to have my central line removed, and will have more freedom to be out and about amongst the masses without my mask as my immune system should be pretty darn good.
I can't wait to feel like myself again, and figure out what my new 'normal' will be. I have a lot to look forward to.
Thank you all for your continued thoughts and prayers, and a special thank you to those who came to visit me in the hospital! Love to you all!
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