Now that I am finally home, I can recap my week for all of you. Oh joy, lol. I started off on Christmas Eve going into the cancer center in Corning to have my picc line flushed at 10 am. The previous day I had noticed that I had a lot of tenderness in my arm around where the picc line ran. When I woke up Wed morning I had a horrible sore throat. Mouth and throat sores are one of the side effects of chemo, so I figured I just just dealing with a whopper. I mentioned both things to the nurse that was flushing my picc (and I'm going to take this time to say that the nurses at the Corning cancer center are all amazing and make all this stuff not as difficult to go through!!! I love them!) and she took a look at my arm. She thought that is looked a little red and swollen and proceeded to take my temp, which was 100.6 (anything over 100.5 is bad in cancer land). She flushed out the picc, and then made a call up to RPH to talk to my oncologist, but he wasn't working. She talked to the oncologist that was on in Corning and he said that I needed to go the the ED. The fever was and issue, as well as the looks of my arm... I think generally we were all afraid that my picc was infected. So... it was off to the ED.
So around 11:30 I was hanging out in emergency, called and let Chad know what was going on, and called to let my parents know (we were supposed to do Christmas Eve dinner at their house). It was decided that I would have blood cultures done out of a regular vein and out of my picc line. I was also to have a chest x-ray and an ultrasound of my arm to check for blood clots. I do have to say, the new ED was very nice, and I timed it perfectly cause I was in there before the madness hit (they were super busy all week!!) and they were pretty quick to get things rolling. After a few needle pokes, I was taken for an ultrasound of my neck and upper right arm, which took about half and hour. I then had the chest X-ray since I was already over in that part of the hospital. I went back to the ED to wait. I was told by the PA that saw me that due to the fever and suspicion of infection that I would be admitted to the hospital overnight for IV antibiotics and possible removal of the picc. Well there went our dinner plans... and I was not very happy about it. While I was waiting for a room to be readied, they brought me some lunch and also brought a little good news. It appears that the current chest x-ray is already showing improvement from the first cycle of chemo. The bad news that came with that was that I had a clot in my arm in the basilic vein. So, before I went up to my room I got my first dose of the blood thinner Lovenox... a nice little shot in my right side. And it felt wonderful.
I got moved up to a room at about 2 pm, and I was placed on reverse isolation because my WBC count was 0.2... which pretty much means I have no immune system. Because of this I got a shot of Neupogen (which is like Neulasta for WBC production). I also started receiving one of the two antibiotics that I'd get for an undetermined period. One was vancomycin, and the other was cefepime. I had also been getting lozenges to help with my throat. And then my wait began, lol. My mom and Chad both came to see me, and I let them in on the news that the cultures could take 2-3 days to come back. Unfortunately it was looking like I'd be hanging out a bit longer than I'd intended. I settled in for the night, worked on some knitting and watched tv (it was free! lol).
Christmas Day was a whole different story. I woke up at 3:30 am with another killer sore throat, and got some tylenol and a lozenge. Eight am rolled around and I could barely swallow my own saliva my throat was so sore. I rang for the nurse and requested another lozenge (the care provider came in for me to talk to). When my breakfast came at 8:15 I re-iterated that I wouldn't be able to eat unless I had something for my throat. And so it began... I'm not going to go into all the details because one- I don't feel like taking the time, and two- because it would make a lot of probably very nice people sound very bad. After Finally getting a lozenge (that didn't work) at around 10:30 I started getting a bit pissed off, lol. We then went through and agonizing cycle of lozenges, chloraseptic spray, and magic mouthrinse... none of which helped. I managed to eat my mashed potatoes that came with my lunch, but I cried like a baby the entire time. The Dr didn't seem to believe that the sore was from my chemo, so he did a throat culture and ordered a ct scan of my neck. Apparently they were checking for an abcess (which I didn't have). Oh, and I forgot to mention I'd been dealing with a fever on and off all day. I think the highest we saw was 101.9. At around 7:30 pm I was given tylenol 3. The Dr had started talking about putting me on a bunch of different things, "just in case" cause he didn't really know what was going on with my throat. At this point I refused anything else and told him I wanted him to consult with the oncologist on call at RPH. All that got me was the nurse supervisor, LOL. Oh did I mention that my also pissed off parents were also in attendance? I wouldn't mess with them, lol. Basically we ended up with me denying a tranfser to RPH, and getting a norco for my pain (finally!!!). And low and behold I was able to eat some soup for dinner... without crying! Score!
So Friday was much better as far as my throat went, but now I was dealing with extreme nausea and vomiting. I battled with it all day long... hardly ate a thing and was getting IV meds to try to treat it. Mom and Dad and Chad came to visit again (I'd pretty much declined any other visitors due to the isolation precaution), and Krystal stopped by in the morning to say hi while she was working :) I don't know if the nausea was from the antibiotics or the chemo, but it sucked. A lot. They did stop the vancomycin at least. And now I was also doing my own lovenox injections twice a day in my little love handles. And I do have to say... for some reason it hurts much less when I do them myself. I have no idea how long I'll have to keep doing them... I guess at some point they'll do another ultrasound of my arm to check things out. Oh, and can I just say how much it sucks to have a picc line that no one can use? By the time I left I had 2 IV's and 6 sticks for blood draws. What a bunch of crap. So one other thing that was determined from my morning blood work was that my platelets were low. Apparently they don't like them to go below 20, and mine were 19, so that meant I was due for a couple of platelet transfusions. So that was how I spent the evening. That and being nauseous, and puking, and repeat. I think I was able to eat a little soup at dinner with the help of my IV meds.
Saturday was pretty much a repeat of Friday... nausea, vomiting, IV meds to treat it... repeat. Around dinnertime I had figured out the timing of my meds before I got dinner so I was actually able to eat and hold everything down. Oh and the neupogen seemed to work, so I was taken off of isolation because my wbc's were up to 2.2. They finished out the last of the antibiotics, and I was told that all of my cultures had come back negative (yay!!!). So my picc line didn't need to come out. My platelets appeared to be dropping again though, so they wanted to keep an eye on that. I had a visit from Tim (who was only in town pretty much the whole time I was in the hospital) which was nice, and then Chad and my parents. I tried to just sleep away as much of Saturday night as I could because they were talking about maybe letting me go home on Sunday.
Sunday morning blood work showed that my platelets were down to 23, and based on the downward trend they wanted to give me two more infusions. They were talking about keeping me another night also. I have chemo scheduled for 7:30 Monday morning at RPH, so the last place I wanted to be was still at Corning. I wanted one night at home before I did more chemo so I could celebrate Christmas with my husband and 7 month old. It was so hard missing his first "Christmas". When I heard that they were going to have to get platelets from Rochester I got a bit depressed. And when the Dr said that they would want to keep me overnight after the transfusion I got even more depressed. Then for some reason, he came back into my room and said that since I was going to be at RPH the next day for blood work, that he would let me go when the transfusions finished. The nurse said she had never seen them get there so fast (they had them by 11:30). I was all finished with them at about 4:30. So after 8 injections and 8 sticks for IVs and blood I was free!!!
I went home and had a very nice first Christmas with Chad and Dagen... and although my hair is falling out (again) and I'm covered in bruises, I'm a very happy camper. :)
Sunday, December 28, 2014
Sunday, December 21, 2014
Treatment Week One
Alrighty... I guess now I'll go into my first week of treatment, up to today. If I wait much longer chemo brain will probably set in and I won't remember the details. So... Monday morning started with an appointment with my oncologist, in which he detailed what my treatment would entail for the next few weeks. I'm doing 3 days on, with the following week off, for 2 cycles, and then another PET scan. I'm getting a cocktail of 3 chemo drugs that they've cleverly nicknamed "ICE" (Ifosfamide, Carboplatin, and Etoposide). I get the 'E' on all 3 days (1 hour infusion), and on the second day I get the 'C' (40 min infusion) and the bonus to day two is I get a pump to take home and wear that infuses the 'I' over a 24 hour period. It's fantastic. The fourth day I go into the clinic for a shot of Neulasta (helps the body make white blood cells), which, is also fantastic. LOL
So after meeting with my Dr on Monday morning I found out that they were going to put in a PICC line since I had my previously placed port removed last August. I'm not gonna lie... I was not looking forward to it. By the time that got scheduled and I was taken to the hospital section of Robert Packer I had been at the clinic for about 3 hours. So I go down and meet the PICC nurse who was super sweet and very happy to explain the procedure to me in detail. It really didn't hurt too much, it was more uncomfortable... especially when she was threading the catheter in. And of course, being that I have the best luck in the world, the catheter was giving her resistance for the last 6 cm or so. I'm a stubborn one apparently. She thought the end of the line was kinked, so she put in a guide wire, and put a new catheter in. And of course, good old luck of the Irish here... the same thing happened with the second one. So then it was off to interventional radiology so they could look at the line with the fluoroscope and reposition it properly. That actually ended up being pretty easy, they only had to move it a little bit more to get it in the right spot. On a side note, I found it hilarious that the radiologist that came in to check out the picc line was the same one that did my biopsy and gave me the pneumo.
OK... so PICC line is in, and I head back to the clinic to get my premeds (steriods and pills for nausea). After those have been in my belly for 45 min to an hour they start my infusion for the day. At this point I force my husband to go get something to eat while I work on my knitting and wait for the poison to infuse. By the time we're done and heading out of there it's around 3:30 (I had been there since 8:30). And I am 3 things... 1- mildly nauseated from my magical chemo, 2- freaking starving cause all I've had to eat are the gmo-laden crackers that they have in the clinic (cause what's great to give to cancer patients.... of course!! GMO's and high sugar snacks!), and 3- Extremely uncomfortable... I'm talking about boobs. If you have no interest in hearing about them, skip to the next paragraph. LOL. One of the most difficult things for me to deal with was the fact that once I started chemo I would have to stop nursing my baby. He was not prepared for it, and neither was I. And after almost 9 hours with no baby and no pump I thought I was going to have a big problem. I am still dealing with this issue... but it's getting better bit by bit. And thanks to an amazing friend and my little freezer stash I had built up, my baby is still getting boobie milk (always frozen now, but hey, it's better than formula). So, surprisingly after I got home, got the girls taken care of and downed some compazine for nausea I wasn't feeling too bad. I made dinner and hung out with Chad and my little guy for the night.
Day two... mom took me up, and things went much smoother. Mostly because I already had the PICC line in place, and I had stopped for something to eat on the way. I got my premeds, both infusions, and got set up with my chemo pump to go home with. What a pain in the butt that thing is... I feel like I'm constantly carrying a purse strapped over my shoulder, and I have to keep reminding myself that I can't take it off. Not to mention the tubing that makes it very challenging to get a coat or sleeve over my arm. Anyway, I had a nice visit from a family friend while I was getting my treatment so that was a pleasantly unexpected surprise. Things were about the same as the day before... nauseous on the way home, but it only lasted for a couple of hours.
Day three... mom took me again, and I was dragging ass. I didn't have to be back until 12:30 cause the pump was due to run until 1:00. So after that finished I got my premed and my hour infusion (most of which I slept through) and then we were on our merry way. I was more tired than anything and I kept having to pee (from IV fluids and the after effects of the drug in the pump which can cause bladder irritation), but otherwise I was in decent shape.
Day four... I only had to go to Corning to get my Neulasta injection, which was a piece of cake considering everything else I'd had done earlier in the week. The main side effect that people report with that shot is bone pain (which I was not looking forward to), so I took the recommended 500mg Tylenol and Claritin (don't know why the combo works, but it does) and was in good shape for the rest of the day.
Day five... No treatment today, no anything today... and boy did I feel like I'd been run over by a truck. I woke up with the baby at around 4am, woke up Chad and handed him over because I felt about as shitty as I could remember feeling when I went through this before. The nausea was extreme, the pills weren't helping, my head was pounding and at about 8am the vomiting started. I think by around 7pm I was finally able to hold down some water and toast. I slept most of the day and was about as unhelpful with my poor little guy as I could be. I was afraid to walk around with him cause I was so weak I thought I was going to drop him. Thanks to my hubby who saved the day and didn't utter one complaint.
I woke up the next morning feeling much better... still a little queasy, but able to go on with my normal day. Resuming my regular mommy role made me feel better, as did dinner out and some shopping today. Hopefully since this week coming up is my off week (and Christmas!) I'll continue to improve and hopefully only need to rely on the occasional compazine. Have a Great Christmas!!! I know I will be enjoying it, as it will be Dagen's first! :)
So after meeting with my Dr on Monday morning I found out that they were going to put in a PICC line since I had my previously placed port removed last August. I'm not gonna lie... I was not looking forward to it. By the time that got scheduled and I was taken to the hospital section of Robert Packer I had been at the clinic for about 3 hours. So I go down and meet the PICC nurse who was super sweet and very happy to explain the procedure to me in detail. It really didn't hurt too much, it was more uncomfortable... especially when she was threading the catheter in. And of course, being that I have the best luck in the world, the catheter was giving her resistance for the last 6 cm or so. I'm a stubborn one apparently. She thought the end of the line was kinked, so she put in a guide wire, and put a new catheter in. And of course, good old luck of the Irish here... the same thing happened with the second one. So then it was off to interventional radiology so they could look at the line with the fluoroscope and reposition it properly. That actually ended up being pretty easy, they only had to move it a little bit more to get it in the right spot. On a side note, I found it hilarious that the radiologist that came in to check out the picc line was the same one that did my biopsy and gave me the pneumo.
OK... so PICC line is in, and I head back to the clinic to get my premeds (steriods and pills for nausea). After those have been in my belly for 45 min to an hour they start my infusion for the day. At this point I force my husband to go get something to eat while I work on my knitting and wait for the poison to infuse. By the time we're done and heading out of there it's around 3:30 (I had been there since 8:30). And I am 3 things... 1- mildly nauseated from my magical chemo, 2- freaking starving cause all I've had to eat are the gmo-laden crackers that they have in the clinic (cause what's great to give to cancer patients.... of course!! GMO's and high sugar snacks!), and 3- Extremely uncomfortable... I'm talking about boobs. If you have no interest in hearing about them, skip to the next paragraph. LOL. One of the most difficult things for me to deal with was the fact that once I started chemo I would have to stop nursing my baby. He was not prepared for it, and neither was I. And after almost 9 hours with no baby and no pump I thought I was going to have a big problem. I am still dealing with this issue... but it's getting better bit by bit. And thanks to an amazing friend and my little freezer stash I had built up, my baby is still getting boobie milk (always frozen now, but hey, it's better than formula). So, surprisingly after I got home, got the girls taken care of and downed some compazine for nausea I wasn't feeling too bad. I made dinner and hung out with Chad and my little guy for the night.
Day two... mom took me up, and things went much smoother. Mostly because I already had the PICC line in place, and I had stopped for something to eat on the way. I got my premeds, both infusions, and got set up with my chemo pump to go home with. What a pain in the butt that thing is... I feel like I'm constantly carrying a purse strapped over my shoulder, and I have to keep reminding myself that I can't take it off. Not to mention the tubing that makes it very challenging to get a coat or sleeve over my arm. Anyway, I had a nice visit from a family friend while I was getting my treatment so that was a pleasantly unexpected surprise. Things were about the same as the day before... nauseous on the way home, but it only lasted for a couple of hours.
Day three... mom took me again, and I was dragging ass. I didn't have to be back until 12:30 cause the pump was due to run until 1:00. So after that finished I got my premed and my hour infusion (most of which I slept through) and then we were on our merry way. I was more tired than anything and I kept having to pee (from IV fluids and the after effects of the drug in the pump which can cause bladder irritation), but otherwise I was in decent shape.
Day four... I only had to go to Corning to get my Neulasta injection, which was a piece of cake considering everything else I'd had done earlier in the week. The main side effect that people report with that shot is bone pain (which I was not looking forward to), so I took the recommended 500mg Tylenol and Claritin (don't know why the combo works, but it does) and was in good shape for the rest of the day.
Day five... No treatment today, no anything today... and boy did I feel like I'd been run over by a truck. I woke up with the baby at around 4am, woke up Chad and handed him over because I felt about as shitty as I could remember feeling when I went through this before. The nausea was extreme, the pills weren't helping, my head was pounding and at about 8am the vomiting started. I think by around 7pm I was finally able to hold down some water and toast. I slept most of the day and was about as unhelpful with my poor little guy as I could be. I was afraid to walk around with him cause I was so weak I thought I was going to drop him. Thanks to my hubby who saved the day and didn't utter one complaint.
I woke up the next morning feeling much better... still a little queasy, but able to go on with my normal day. Resuming my regular mommy role made me feel better, as did dinner out and some shopping today. Hopefully since this week coming up is my off week (and Christmas!) I'll continue to improve and hopefully only need to rely on the occasional compazine. Have a Great Christmas!!! I know I will be enjoying it, as it will be Dagen's first! :)
Thursday, December 18, 2014
Hodgkin Lymphoma Take 2...
Well... here we go again. For any of my friends and family that were not aware, unfortunately I recently found out that my cancer has returned. When I went in for my normal follow up with my oncologist in Nov., I mentioned that I'd been having occasional twinges of pain (not really pain though, something just felt a little off) so he ordered a CT scan just to be safe. My blood work was all normal and I felt fine otherwise. Well... the CT scan showed a suspicious lymph node, so then it was time for a PET scan. The PET scan lit up in two areas, both in the mediastinum again (one 2 cm, one 4 cm). So the next step was another biopsy to confirm that it was Hodgkins again. I had a CT guided needle biopsy done on Dec 9th, which went well aside from the small pneumothorax I ended up with due to the location of the mass right next to my lung. Results of the biopsy confirmed the recurrence.
In the meantime between scans and biopsies I was told that treatment would be different this time around. Due to the recurrence time and location it was determined that I would not receive any radiation this time. The recommended treatment would be high dose chemotherapy and a stem cell transplant. I was sent to Roswell in Buffalo for a consult since it is the closest place to me that does SCT's. I met with a bunch of great people, including my new oncologist. It was explained to me that I would need to go through chemo at home first to get the cancer knocked back, and then once I have a negative PET scan I can return to Roswell to start the rest of my treatment. That treatment consists of injections to boost my stem cells (I don't have to use a donor since my bone marrow biopsy was negative), and then a few days of collection. I'll essentially be hooked up to a machine that will draw my blood out through a central line, then go through a centrifuge to extract the stem cells, and then be pumped back into me. Then at some point following that, I'll be admitted to Roswell to start 8 days of high dose chemo. Basically they are going to nuke me. This chemo will kill everything, which is why they collect my stem cells in advance. After the chemo they will re-transfuse them back into me, with the hopes that they jump start my body into reproducing healthy cells. In case you're interested in more details... high dose chemo and sct for Hodgkin disease.
It's going to be a long road to recovery, but I'll get through it. It may be a bit more challenging chasing after my soon to be crawling almost 7 month old son, but I'm blessed to have wonderful family and friends for support. And I'm also very blessed and lucky to have my little guy, because the treatment I'm going to get will almost guarantee that he will not have any siblings in the future. For anyone reading this that may not know my history, I was lucky enough to get pregnant about 4 months after finishing chemo the first time around, and had my beautiful baby boy Dagen on May 23rd of this year. I'm not sure how often I'll post on my new "blog", but I'll try to at least keep up on a regular basis. I've gone far enough for now... I'll post a little bit about how my first week of treatment has gone a little bit later, as I have yet another Dr appt to get to. :)
In the meantime between scans and biopsies I was told that treatment would be different this time around. Due to the recurrence time and location it was determined that I would not receive any radiation this time. The recommended treatment would be high dose chemotherapy and a stem cell transplant. I was sent to Roswell in Buffalo for a consult since it is the closest place to me that does SCT's. I met with a bunch of great people, including my new oncologist. It was explained to me that I would need to go through chemo at home first to get the cancer knocked back, and then once I have a negative PET scan I can return to Roswell to start the rest of my treatment. That treatment consists of injections to boost my stem cells (I don't have to use a donor since my bone marrow biopsy was negative), and then a few days of collection. I'll essentially be hooked up to a machine that will draw my blood out through a central line, then go through a centrifuge to extract the stem cells, and then be pumped back into me. Then at some point following that, I'll be admitted to Roswell to start 8 days of high dose chemo. Basically they are going to nuke me. This chemo will kill everything, which is why they collect my stem cells in advance. After the chemo they will re-transfuse them back into me, with the hopes that they jump start my body into reproducing healthy cells. In case you're interested in more details... high dose chemo and sct for Hodgkin disease.
It's going to be a long road to recovery, but I'll get through it. It may be a bit more challenging chasing after my soon to be crawling almost 7 month old son, but I'm blessed to have wonderful family and friends for support. And I'm also very blessed and lucky to have my little guy, because the treatment I'm going to get will almost guarantee that he will not have any siblings in the future. For anyone reading this that may not know my history, I was lucky enough to get pregnant about 4 months after finishing chemo the first time around, and had my beautiful baby boy Dagen on May 23rd of this year. I'm not sure how often I'll post on my new "blog", but I'll try to at least keep up on a regular basis. I've gone far enough for now... I'll post a little bit about how my first week of treatment has gone a little bit later, as I have yet another Dr appt to get to. :)
Subscribe to:
Posts (Atom)