First off I just want to say that I know this blog post is late and I started writing it at the 2 week mark, but I’ve struggled to focus on it, honestly it’s hard for me to be upbeat and write a blog post about myself when my mind is elsewhere. A dear friend of mine has been in the fight of her life and while I’m optimistic that she’ll win the fight and be home soon, there are so many unknowns and with my hormones being all out of whack, my emotions are all over the place and I’m just so worried about her, it’s hard to just focus on writing about myself because it’s hard to write about yourself when someone you care about it going through so much. But I know that people are following my recovery so here is the blog post I’ve been writing a bit on each day.
Boy this has been an exciting week for me, far more exciting than I would prefer, but such is life, gotta go with the punches, right? Minus the partial DVT in my left jugular and all the excitement that went with that, my week has been pretty good. No down days, just normal days like I would have pre-HSCT with some minor side effects popping up once in a while and occasionally old MS symptoms popping up to say hi and to remind me that they are still there to annoy me. So I have debated about whether my weeks will be every Wednesday or Thursday because I checked out of the hospital on a Wednesday but got home on a Thursday, so I had a dilemma. But I decided that I’d go with Wednesday because my 2 and 4 week blood works are happening on Tuesdays, so I’ll have the results no later than Wednesday morning, so Wednesday’s it is!
So the start of the new week wasn’t too bad. I went from last week ending on a bad day, to starting off the week on a good day. My energy level was back and for the most part I was back to living a normal life. Nothing really in the way of side effects other than occasional hot flashes and chills periodically throughout the day, but I’m really not sure if that is a side-effect of the chemo itself or of wacky hormones. I know for women especially hormones can be really wacky and you can go into menopause or at least have symptoms of menopause for months. And I’m not going to lie, I am the odd one that is hoping for menopause because I do have mild endometriosis and it does cause me pain during ovulation, my period, and then randomly throughout the month, and for the most part menopause makes that go away, so I was hoping. But it appears that for me, my monthly visitor is not going anywhere anytime soon because I had my usual ovulation cramping, so I’m expecting my dear friend to show up right on schedule, every 28 days, like always…. Most people with endometriosis have odd cycles and fertility problems, not me…. We will see if I am correct, I am hoping I am wrong, especially because I am now on blood thinners and it is supposed to speed up your period bleeding and make it super heavy for a couple of days and then end, but then it also makes cramping worse for those days….not looking forward to either of those things. But back to my first couple days of this new week, I did notice that the left side of my neck was starting to hurt a bit more, but I chalked it up to phantom pains, a side effect some people have after having a line removed. Nothing all too annoying, so I just ignored it and went on with life.
But then we get to Saturday, when things got interesting. So like always I woke up feeling great. But after I got moving I noticed the pain in the left side of my neck was far more intense than before and it radiated up into the left side of my face, and I developed a headache right above my ear. I will say that when I’d sleep at night, I had no symptoms at all, apparently symptoms get more intense the more active you are. So I did my research as I suspected there may be a blood clot there and my symptoms matched up to what I read online, so I decided a trip to Urgent Care at the hospital was in order. Lucky for me, how my insurance works, a visit to Urgent Care has the same co-pay as my actual doctor, so not a huge expense. I described all this is my last blog post, so if you didn’t read that one and are curious about this, please refer to that post, if you don’t care, then don’t bother to read it… But long story short, they did an ultrasound on the veins in my neck, and they found a partial DVT in my left internal jugular vein, the one where I had my neck line. They believe it was caused by the line, made a bit worse by the plane trip even though I had a blood thinner shot prior to the flight, then gradually got worse as the platelets attached to the clot. I still have some blood flow there, which is good. So they gave me a shot of Lovenox in my stomach to start thinning my blood, then started me on Xarelto at 15mg twice a day for 21 days, then 20mg a day once a day for another 21 days. They said it could take several weeks or longer for the clot to completely break apart. So went to Walmart for my prescription, they didn’t have enough of the 15mg meds in stock, so could only get a few days worth. Fucking first of the month happened right before I got the clot, everyone on Medicaid and Medicare went in for their monthly meds and cleared them out, next shipment was going to be on Tuesday….But whatever, I had enough meds for a few days so all was good. The rest of my day was rather uneventful and towards the end of the day my neck pain started to subside a bit, so I assumed the blood clot was starting to break up a little bit. But I was told if I had any chest or lung pain to immediately go to the ER as it could be that the clot migrated to my lungs. Here is a pic of the ultrasound machine and the tiny little bruise around my injection site from the Lovenox, taken Sunday morning, for those who did not read my last blog post, and as I said in my last blog post, my pajama shorts are amazing and glow in the dark.
So then we get to Sunday, the day started off pretty normally, no pain at all when I woke up, like always the pain never is there at night. The pain wasn’t as bad as on Saturday and for the most part was tolerable and just occurred off and on, same with the headache. I had pretty good energy and felt good otherwise. But then in the evening I started getting some pretty intense chest pains and having shortness of breath and my lungs hurt when I breathed, so I decided that I was not going to take any chances so went to the ER. Amazingly for a Sunday evening when everything else in town is closed, it was empty. Literally I was the only person in the waiting room, so I got in quite fast, I was shocked, usually it is always a several hour wait in the waiting room just to get into an actual room, I know this from past experience. Now I will say being in the ER brings back bad memories, my last experience there involved being diagnosed with MS, so not a fan of the ER at all…. But once I got in the room and got hooked up to all their machines to monitor blood pressure, heart rate, pulse, and ECG, at various intervals, I dealt with an idiot female nurse who didn’t understand anything about my procedure at all and proceeded to write neutropenic on my door, so then everyone who came into my room gowned up and put on a mask, so I had to explain to the doctor and another nurse that they did not need to do that as I was wearing a mask already. But I will say it is amazing how fast those guys could rip off those paper gowns, ha! Apparently they really hate wearing them. But then they did take that off my door…I mean I have a low immune system but it is not that low anymore. But anyways the doctor decided to run a ton of blood tests to see if there was a clot. They took 5 large vials of blood, amazingly this gal who did my blood draw also hit my vein on the first try using a giant ass needle again. I felt nothing. I seriously think the nerves or pain receptors in that region of my arm are dead from all the needle sticks I’ve had there over the past year, which I guess is a good thing as I’ll be doing a fair bit of blood work in the future. But they used tape on my arm to cover the gauze, which them removed a fair bit of arm hair when removing it, not impressed at all… So I waited about an hour or so to get the results from all the tests and the doctor came back in and said that I have no signs of blood clots in my lungs or chest, and that he felt the pain I was feeling was the result of the Xarelto getting into my system and it should subside after a while as my body adjusted. This was not a listed side effect of the medication by the way… So it was late after leaving the ER, so it was go home, get the kids in bed, get myself in bed, and call it a night.
Monday wasn’t a super eventful day, I felt pretty good all day, had energy and things went well. I was having some pretty insane acid reflux/heartburn all day long though, which apparently is a fairly common side effect of the Xarelto. It didn’t matter what I ate, it caused me issues. Some people say this is temporary until your body gets used to the med, others say it is longer term, so we will see. I’m trying to avoid taking an antacid type med if possible just because I really hate taking meds and will try to avoid them at all costs unless they are necessary. But the same antacid we were given in Russia twice a day is sold over-the-counter in the US, and I tolerated it well, so if need be, I can pick some up at Walmart.
Then comes Tuesday, a somewhat more eventful day, mainly because it was my first actual doctors appointment with my actual family doctor since being back from Russia. Some people call my type of doctor a GP or general practitioner, but mine is actually called a family doctor that practices family medicine, basically same thing different name but mine deals with patients of all ages, no restrictions like a lot of doctors have. So I have given US doctors a lot of crap in my blog including my own, because he initially did kinda blow me off on my MS symptoms before I was diagnosed, chalking it up to hormones. But after misdiagnosing me, which really is a fairly common thing amongst MS patients I have learned, he has been a really good doctor compared to most I have encountered and he has fully supported my HSCT journey.
I had to drag my kids with me to this appointment as I had nobody to watch them, which really made the whole experience more exciting, I mean trying to contain an 18 month old that wants to get into absolutely everything in the doctor’s office makes for a fun time! Luckily my doctor loves kids, he’s not much older than me and has 5 younger kids of his own, and is my daughter’s doctor as well, so he’s used to this sort of thing. I got in just shortly after my scheduled time, which that itself is pretty amazing. So the nurse did the usual routine, had me step on a scale and record my weight, down to 130 now… Which is still in my normal range, I bounce between 125 and 135 but this is the lowest I’ve been in about 6 years, so a bit concerned I’ve dropped about 3 pounds in just 3 days, thinking I’m going to start supplementing myself with protein drinks to boost my weight as well as eating higher fat foods, not junk food, but higher fat real food. Even though I eat normally and eat quite a bit, obviously the chemo is still eating up more calories than I am consuming. Then she did my temp, blood pressure, heart rate, and pulse. All in my normal range. Then in came the doctor, so first off we discussed my procedure, I showed him my paperwork that I got from Dr. F so he could see my treatment protocol, what meds I’d been given and all that good stuff, then he inquired if I had lost my hair and if I was bald under my bandana, which I informed him that I was pretty much bald. Then he did the usual heart/lung checks where you breath in and out and he listened with his stethoscope all over my back and chest, that was all good too. Then we discussed my DVT, the standard treatment for that type of DVT, Xarelto, and the length of treatment. So it sounds like the treatment for this type of DVT is 3 months of blood thinners, so he wants me to stay on the Xarelto for 3 months and then at that time I assume we will do another ultrasound on my neck to see if the clot has broken up at all. If it has, then I should be good to quit the meds, if not I’ll most likely need to take them for longer. Blood thinners in general don’t really break up clots, they just prevent them from getting bigger, but usually with this type of clot the body will break it down and take care of the problem. So we will see. And I determined my NP that I seen on Saturday was not super knowledgable about Xarelto because my doctor said you need no blood testing on it at all as it isn’t affected by diet, like some other blood thinners are. So then we discussed what type of blood work I needed done to monitor my numbers, and he printed me out a sheet to take with me for my blood draw, and I was on my way. My next appointment with him is in 2 weeks.
So then I headed into the larger neighboring town for my blood draw. My family doctor is located in a clinic run by the area hospital but is based in the town closest to where I actually live, so they don’t do blood draws there, so I have to go to the neighboring town to get that done. So I have several options of where I can go to get my blood drawn, my top 2 choices are usually the hospital itself that has a section you can go to that deals with blood draws, then a building in the same complex as my neurologist has a section for blood draws. I opted to go to the building by my neurologist and I figured it’d be faster and less people, which I assume I was right. I was kidless at this point, dropped them off at the in-laws, could not deal with kids at a blood draw, that would not go well. So I waited for about 20 minutes, just because the lady doing the blood draws was elsewhere in the building for a while. There was one woman ahead of me, so once the lady was back in the room doing blood draws, I was in there within 5 minutes. So even though I had 2 other blood draws in the past few days, she still agreed to try my left arm first as I told her my right arm veins are shot. I got excited when I seen she was using a smaller needle than my last 2 draws used, she was using the same style they used in Russia, or so I thought… So blood draw went well she hit the vein first shot and that didn’t hurt at all, then she went to pull the needle and said oh you’ll feel a slight tug, she hit one of the tabs at the top of the needle and it shot the needle out of my arm and up into the tab section, holy hell that hurt a lot. I think next blood draw I’m going over to the hospital since the giant needles are more pleasant…. But then she put the gauze on and used tape to stick it to my arm. Back to losing more arm hair again. I don’t know if it’s budget cuts or what, but I am not digging this tape stuck to my arm, I much preferred the stretchy stuff they used to use here and that they used in Russia, doesn’t remove arm hair and applies more pressure, since I am on blood thinners and the tape didn’t hold it tight enough to my arm, so I had to sit in my car and hold the gauze tightly on it for 5 minutes to get the bleeding to stop. But then I was done for the day. Figured since it was late in the afternoon I’d get my results the next morning. Pictures from my blood draw.
After that I braved Walmart to pick up the rest of my Xarelto as they did not have enough to fill my prescription originally. So I called ahead to ensure they had enough, and they said yes they did and my prescription was filled and waiting for me. I went there and they had my 20mg filled for my second 21 days, but they had not filled my 15mg, even though I specifically asked on the phone if they had filled that one. The gal working there then told me, I am sorry we only have 31 pills left in stock and you need 34. I really just wanted to smack the bitch and say really, I was supposed to be the first fucking prescription filled this morning when the new batch of meds showed up. But I restrained myself, and one of the higher-ups came over and told the gal to check on the shelf because the computer inventory is often wrong, and luckily for them it was wrong, they had 39 pills left, so they could fill my prescription, otherwise I would have flipped out and asked to speak to the store manager. But in Walmart style even though my prescription was supposed to be filled, they would not fill it right then, I was told it would be at least 15 minutes. But then other people in line were being told it would be at least 30 minutes, so we left the store for a while and went to the dollar store to look for 4th of July decorations. My oldest kid has a purple X-mas tree that we decorate seasonally, needed holiday appropriate garland for it. Yes, we are strange, I know. And then went back to Walmart and they had my prescription ready. And I had filled out paperwork for my Xarelto on their website and they will cover $3400 for the year, so I just had to show my card for that when picking up my prescription and they covered what my insurance didn’t, so as opposed to spending close to $500 for the rest of my meds, didn’t have to pay anything! So that was nice. Rest of the day was uneventful, felt pretty good and nothing exciting to report.
Wednesday was my 2 week mark and I started off my day by checking my hospital medical records online to see if my blood work results were posted yet and they were. To me my numbers looked good. Platelets holding strong, Xarelto doesn’t lower platelets just modifies something in them or in the blood not really sure… Hemoglobin is still slowly rising but I’m in the normal range. And then my Leukocytes are 5.9, which the US does measure differently than Russia and 3.8-11 is normal, so they are raising at the rate they are supposed to. Pre-HSCT my counts were 6.5, so I’m getting closer to where I was prior to the procedure. Now other numbers related to WBCs are still lower than normal and that is to be expected, those are the numbers that usually don’t get back to normal until at least 1 year after the procedure but for most people it’s closer to 2 years to get back to normal. Now my blood glucose level is slightly higher than the normal range, but that has been like that in my past blood draws too since being home and the doctor said that is completely normal for several months after this type of treatment, from both the chemo and the steroids and usually goes back to normal after that time frame. Some people also have higher cholesterol for the first few months back home as well, but mine is in the normal range. So I emailed off my blood work results to Dr. F since he wanted to see them, and he ended up responding to me at around 10:00pm Russian time, which really is quite impressive for a doctor. He said everything looked good and is where it is supposed to be. Really after getting my blood work results the rest of my day was rather boring. I felt pretty good and my energy level was good and I went about having a normal day living life.
So now as I always do, lets talk about improvements I’ve seen and side-effects. So first I’ll discuss improvements. Well my vision for the most part is still really good, only time I have issues is when outside in the bright sun, where I do still have sensitivity to the bright light and need to wear sun glasses and I do have more floaters when in the bright light, otherwise everything is good with the eyes, vision is staying clear and they are focusing together. Now we have been having very high temps here, in the high 90s and even over 100 for 2 days this past week, normally the heat kills me and I can’t really function like a normal person, but the heat really wasn’t a huge issue for me, on the days when it was over 100 I was a bit fatigued at the hottest part of the day, but that was it, so that was pretty amazing and I hope that sticks around. Also I am regaining more feeling and sensations in my hands and feet. Then not really related to MS but I have always had horrible allergies, especially to Russian Olive trees which we have numerous ones on my property and they are in full flowering mode now, and this is the worst time of the year for my allergies, I produce more snot and go through more kleenexes and usually am just miserable. But since I’ve been home I have had no allergies at all, it is so odd to be able to go outside and not be sneezing non-stop and producing large quantities of snot. Not sure if that will stick around or not, but I’m enjoying it for now and I hope it stays that way.
Now for side-effects. Well I do have the DVT, but that really isn’t a side-effect that is more a complication, and that does cause me some headaches at times and pain in my neck/face, but that really isn’t side-effects that people care about, so we will focus on side-effects that actually come from the chemo and steroids. I still have hot flashes, they occur randomly throughout the day, not so much at night anymore. The only time I tend to have them at night is when I wake up if I need to pee or when I wake up in the morning. Then once in a while chills, but those aren’t as common anymore. Now I am losing weight and am going to start supplementing my diet with more fatty foods and protein drinks, I believe that is because of the chemo. Then I have had some mild bone pain in my left arm and shoulder, nothing too extreme and nothing that I’d take pain meds for. Then I’ve had pretty insane acid reflux/heartburn as well, but that is caused by my Xarelto so not really related to the treatment itself. So all in all not a whole lot, so I can’t complain.
So that sums up my week, it’s been quite the week. Hoping next week is far less exciting.