Chemo Hair Loss And Other Side Effects Part 1 # 17

This morning I woke up - and this is what my hair looked like. I'M super sad, it's basically one big mat, so my hair has been coming out quite a bit. I actually cut a couple inches off uh like a week ago, and I've been trying to really brush it consistently, with basically a pick or a wide tooth type comb, and last night I didn't do it because I just so much was coming out. I'Ve been having an emotionally hard time with it, and then I had read about people saying make sure you do that, so it doesn't get matted, and here it is matted and basically I'm scared to brush this out, because that means probably this is a huge chunk Of hair that's coming out, but my um here's, the back, you can see - I mean I it was down to here. So I cut at least two or three inches, but my daughter is coming over today and I'm gon na have her help me kind of chop. It up to here, like a Bob, I think I'll, do some video of it you'll see um, really sad. I think I'd shared in my last video that they say 50 hair kept, is a success with the dignity cap and even though I knew that this is possible that I would lose some hair there's nothing that prepares you for it like when it happens, and so Many other women in those online support groups have said this like when it happens, it's just kind of devastating, so I haven't bought any wigs. I don't want to be bald, I'm not sure what I'm doing, I'm just playing it by ear. I guess, but I'm going to hopefully have a little bit shorter hair because I literally have hair all over my house. It'S just it's amazing. You can't feel it fall out and you look out and they're down and there's like hair all over you, so um yeah. That'S my current situation, I'm just gon na brush it out and I've got a towel down here. It'S one of my Lion, King towels. I used to love Lion King or I still do and um just thought. I would share it with you and see how much of this stays in or gets edited out. I know it's gon na grow back, it's just hard. Oh my God. Okay, I'm gon na wait to come to bed. I know you might think this is strange like watching this, but I it makes me feel a little less alone like sharing it. I guess I mean I've seen pictures of other women sharing that with their hair coming out um, but I haven't actually seen it in. Maybe this will help somebody kind of see it I mean so far. I have no big Patches, at least that I know of. If you don't see this and you don't know that I and losing care you wouldn't know, gosh hair is such a thing. It'S like to a fan anything an attachment. I often don't even like what I look like with my hair pulled up in a ponytail just seeing my face, so it's um lots of opportunity for deeper self-love and acceptance, but I know I'm not alone in this - that many women are very attached to this, because Um, based on my past and a lot of traumases traumas, you know I used to think I was stupid. I was told that a lot not until much later did I find out a lot of learning disabilities and ADHD here's here's my hair before I even get to that matted area but um I relied heavily on my looks my hair. It'S hard to admit that very publicly um and, thank goodness over years of wisdom and growing. I know that I am so much more than that and it's hard shaving, your head is a and being bald is a big thing. Like big part, our hair is a big part of our identity, and maybe she was you know, working under mental health, and that was part of it. I don't know, I don't judge okay, I think pretty much just combed out this front side and both front sides, and now I have to get to this big matted area this in and it's just like it's like the beginnings of. I guess this is how people do dreadlocks. You know they. Just their hair gets all matted together, but I'm sure there's a system, so I'm just gon na. I guess start at the bottom. It'S like it's kind of like it's stuck, so the hairs that have come out but haven't been pulled out are all sticking together. So this is like basically happened when I was sleeping - and I do feel like I was tossing and turning a lot last night on my satin pillow, which is supposed to help create less friction. I'M gon na have to just start cutting this long stuff because it's because it's matted, so I don't pull out extra attitude. So this morning I went to my recovery meeting, it's a women's only meeting on Zoom and it's actually, as you may or may not know. I have 20 years or 20 and a half years of recovery from drugs and alcohol substance abuse a result of lots of childhood trauma and um the readings we have readings. This is a Recovery Group. That'S it's a lot of people in a there's, a couple: people in n, a Narcotics Anonymous Alcoholics Anonymous. There are some women in code, codependency or Al-Anon, so we're of kind of more of a spiritual group. I would say, that's very accepting and we do a couple readings every day, and so the readings were about gratitude this morning. So it was such a good reminder for me. I'M gon na try to just use my hands a little bit now. It was such a good grad, a reminder for me about gratitude, because I've been really gosh in my head overthinking this last week a lot about trying to move dealing with chemotherapy and side effects. Oh my hair, falling out. I had an interview for a job which was amazing at coaching health and Mama's coaching job, a part-time one, which I'm excited about. Hopefully, more interviews down the road but um this this meeting this morning about gratitude was just so powerful because I need to remember constantly to focus on what I'm grateful for. So I'm grateful that I have hair grateful that I have treatment. I'Ve been on Medicaid, I'm grateful that Medicaid pays for everything. It'S my understanding. If you have private insurance, you'd be paying a lot still. So that's been helpful. Financially, I'm grateful for all the love and support. I have gotten from people so like right now, I'm just barely picking at it and a lot is coming out - I'm not even fully coming through it, but I'm getting all that matted stuff out. I cannot believe how much hair this is and a lot of women. I think at this point are just like shaving it and going bald, but I am really still wanting to hang on to hair. Oh there's more matted back here I haven't gotten yet um, but who knows I mean I've only had one treatment of four. I have three more coming ones next, Thursday February 23rd. I think it is um and you know I hope to not lose all my hair, and I know I'm just gon na grow back and it's a big thing. One of the biggest things that people don't realize is like it just tells if you're bald, it just tells almost everyone that you have cancer and the thing I've learned about this cancer journey is people kind of forget that I'm me, and I just think of me As a person with cancer - and you know, then it becomes all about that and there's you know: people don't know how to handle it. So there's self there's pity at people there's you know only asking them about what's going on with their cancer and forgetting that they still have the rest of their lives. So many women in the support groups are we're always complaining about. You know. We do appreciate that. You all say: you've got this and you're strong and you can do it, but I've said this before there needs to be more empathy and listening, like even statements like that's, got to be hard or you know, I'm sorry you're going through that. That'S that's uh, not easy, and you know I. What can I do to support you instead of just saying oh you're strong, you got it like. Sometimes we don't feel strong when I am home alone by myself. I don't always feel strong and I know I have. I can reach out, I can connect with people and it's not always easy to do that. I am going to say it again and I'm gon na keep saying it, and I want you guys to all keep holding me accountability, I'm going to have a packing party because I'm moving while I'm going through chemo, and so my local friends who've offered to help. I'M going to invite you to come over and pack, which is oh, my God. This is so much hair, which is hard because it's hard to have other people pack, your stuff. I guess I haven't really talked about my other side effects, and this would be a good time. My last video just shows you like the day of chemo and all the things. So what happened is um. My chemo was on Monday, the 30th January 30th or 31st. I can't remember whatever that Monday was a Monday and I was taking steroids, taking these steroids to take the day before the day of and the day after, and so the day after on Tuesday, I woke up - and I felt great I was like so super excited That chemo didn't get me. I had no side effects. I was feeling amazing and when I look back on that look back on that day, a few days later, I realized, like I, was like high on the steroids like I was just pumped and I took a lot steroids as a child, and it just makes you Really jittery and energetic and excited I mean almost almost manic like, but but I was so excited that I feel like I didn't - have a lot of side effects. So I didn't realize that's what it was at the time and what happened is I ended up taking my last steroid for that day on Tuesday, the day after chemo a little bit too late in the day it's just because it was, it was an overwhelming amount Of everything going on - and I couldn't sleep that night and I finally fell asleep at like four in the morning and the next day Wednesday. I was supposed to teach yoga, and so I about 7 A.M. I'D woken up and I called and asked for a friend to teach for me which I'm grateful she did and I pretty much stayed in bed till noon and during that time period, when I had woken up at seven and kept trying to go back to sleep. I started experiencing this extreme pain pain that I have never had before and it wasn't like muscle, pain or soreness. It was bone pain, so you have 206 bones in your body, and every single 206th bone in my body hurt so bone pain. Is this like just excruciating pain? It'S it's really inexplicable. It'S like it was stabbing. It was throbbing, it was dull, it was achy, it was everywhere I felt like my head was being squeezed. You know my skull, the bones of my skull and it was just unbearable. So I pretty much stayed in bed the entire day on Wednesday and to backtrack. I had gone on Tuesday. The day I felt high on the stairs I had gone in to get this shot called new last us. They gave me just a little shot in my arm and on my right arm. I was getting an IV of hydration because I was feeling they say. It'S easy to get dehydrated, I'm like. If I'm here, give me some hydration, so I got the shot. I got the hydration Well turns out that that bone pain is really from the shot, so the shot new lasta is designed to increase the white blood cell count in the bone marrow of every single bone in your body. So chemo decreases the white blood cell count and the shot is supposed to increase it. So literally, you know, growth spurts is an understatement, but it's like every single bone in my body was growing and creating this, the white blood cell count to the bone marrow. Are the neutrophils really is what it is, and I um told you a while back that I got my bone density tested and I have osteopenia, which is higher than normal, which is not good and it's not quite osteoporosis. So osteoporosis is when you're really concerned about following the osteopenia is on the way to osteoporosis, which is pretty rare for someone, my age of 50, to have that and um. It has a lot to do with the obsessive amount of steroids and antibiotics. I took as a child due to my life-threatening asthma, so that's really what the bone pain was, and I was told to take Claritin the next day when I got the shot but not before, which I found out later many people recommend before and um. So I took it every single day and I took a little bit of Tylenol, but I really didn't know they didn't really tell me how much Tylenol or what what bone pain was really like, and I guess only 20 to 40 percent, which is still fair amount Of people, women have this bone pain, side effect and uh. So I was obviously one of them and I think higher susceptibility because of the steroid use, which I did a lot of research on and the doctors were kind of like you know they, don't they don't know everything about all the drugs and everything gosh. This hair is still all coming out um, so so by Friday, after I came on Monday, I called the doctor's office, my regular doctor, wasn't there. I talked to the nurse practitioner and said you know what, and I think I need some narcotics or something I can't handle this. It was a 20 out of 10 on a scale of 10 is the highest of bone, pain or pain. I was at 20. and so they sent me in a prescription. I ordered it. I used capsule, which is this great online pharmacy. They deliver to your house and I was in a bunch of different meetings and my prescription arrived and then suddenly, like a light, switch. The bone pain stopped like it had gone down a little bit, starting that Friday before um, oh Friday, I gotten the medication, I'm getting my days and times mixed up, but I'd gotten the medication. And then, when I looked at it, it was actually a steroid and she gave me like five of these steroids instead of a narcotic, and I was confused, I thought it was actually one of the anti-nausea pills, because I've gotten so many medications over the last few Weeks and so I didn't take it - I didn't realize there was a steroid, but the bone pain went away, and so then I realized that I had to keep really taking that Tylenol. So um was taking like on three to four grams of Tylenol day, which you have to be careful. That'S the upper limit, but you have to be careful because of your liver, and so I have literally not been taking that much. But I've been taking consistent, Tylenol and Tylenol PM every day, since I'm really really grateful back to the gratitude that I did not have nausea. I had a little bit of nausea, but I didn't have vomiting or diarrhea or um constipation, just a little bit of of two of those that weren't bad at all, but no no vomiting and which is nice, and so my biggest side effect also has been my Metal mouth they call it metal mouth, so it feels like I'm eating metal. All the time like, I can't taste much of my food and I've been rinsing with sea salt and baking soda, which they recommend they recommend two or three times a day. I'Ve probably been doing it once or twice a day. I should probably do it more um and what else I haven't had any neuropathy issues which I'm so grateful for I've been spraying tea tree oil kind of diluted. On my fingernails and my toenails, I have been a nasal irrigator. My whole life call it Nettie in yoga, so just cleaning your nose kind of spraying, some sea salt up there. I'Ve been doing that for 25 years or something and um. So I think I really looked, but I think I'm starting to lose my nose hairs and so it's interesting because it can get kind of congestion and some bloody nose. I haven't had a bloody nose, but that's uh been a process, so there's so much that I've been just trying to maintain well back to the metal mouth. I'Ve been eating with plastic, forks and spoons, which has been recommended by a lot of people as well and um. Taking my melatonin at night and let's see what else it seems like there's so much like taking care of yourself after chemo is, is really a full-time job. So um it's been a lot and, like I said, been basically combing my hair with my fingers or with this kind of pick like comb um from the beginning, I've only washed my hair twice. I had my sister help me wash it. They basically say to baby it as much as possible, so I do feel like it's uh, definitely thinning, I'm a little nervous about pulling it up and looking to see if there's some patches, I might have my daughter help me with that later, but for the most Part like when I look at it right now. I got all that matting out, I don't it doesn't. Look like I've lost hair, but I have look at this. This is so much hair, so I do think it's coming out like this makes me think of trump or toupee or something I do think that it's coming out evenly. So hopefully it's not patchy and it's gon na look. Okay - and you know every time I just run my fingers through it, instead of the usual one to two - it's like 20. and I'm not pulling it out, it's already hair, that's released it's just again. They told us give us this whole instruction sheet of how to take care of your hair that it's important to to do that, so that it doesn't get matted like it did last night, so I definitely won't be um not doing that again. I definitely need to brush it at least twice a day and I'm trying to just not touch it much at all, because I don't want any extras to come out. So there's my vanity video about my hair, but also my side effects and what's been going on. The last two weeks, so I have um my next chemo next Thursday, like I said, and we're gon na try. I guess I didn't complete that thought. You can tell I'm a tangent person. This is me or the ADHD live in my life um. I talked to my doctor yesterday at a virtual call and I said: look I am not going to do that, shot again, no way in hell, though so if that means, I don't do chemo you. Let me know, and so we talked about it quite a bit and he said you know, look you could you could do the shot because it'll most likely be less because you've already gone through it once so? Your bone system has. Your body has started to build those neutrophils in your bones. The bone marrow another option which I brought up based on my research is there's a neupogena which is another shot that came before the new lasta, which is at like more of a daily. So it's short acting so the one shot that I got was supposed to last for two weeks or so so this shot is like I'll. Take it the day after and the day after and the day after, I think for six or seven days, and he said that he's gon na look into it with my insurance, whether I can inject it home kind of like people with diabetes, do and um, and If not, and if I do it, I can do it one or two days and if the bone pain is really bad again, I can absolutely stop so. I won't have as much in my system as I did with the previous one. We also do blood work. Every single time before um chemo, so they'll check my neutrophils and my white blood cell count and see where that's at and that will help decide as well. So I might do that neutral pochina, I'm saying it wrong! Anyways um! I might do that one or I might do neither. I just see how we feel and the the concern is. If I do neither that sounds like five to ten days after I just have to be really Mindful and careful, because if I start to spike a fever that could lead to a pretty serious infection. So because the chemo lowers your your ability to fight off infections, and that could be a hospital visit with antibiotics and IVs and fluids and and nutrients and stuff. So of course, we don't want that to happen either. So welcome to my life as I'm also navigating packing and moving and trying to bring in more steady work because I'm self-employed, but I also health and wellness coaching for companies and just hopefully bringing on another part-time opportunity so long, video thanks so much for watching. Maybe I'll cut a bunch of this out we'll see, but I appreciate your support Michael GoFundMe is below please like subscribe and check out my journey. I think this will be day set number 17th of my video uh, my Chronicles, so you can go back and check out the first ones and see my journey from the beginning and I haven't been doing a habit - hacking, video lately. This is really I'm back to kind of one video a week. Barely I missed two weeks with all those side effects, so I'm gon na try to get back to that and tell you my updates, but I can tell you right now: it's the middle of February. What is it February 18th today and uh? I feel like I lost about five or six weeks already um, but understandable right, I'm going through chemo and uh. You don't really know what's going on until you're in it. So thank you so much for joining me. I hope that you have a wonderful day and I'll see you soon.