Today I had to doctor's appointment we've all been waiting to hear about.
Derek seems to have a magical power to make doctors take forever. We waited to see the doctor for about an hour. I didn't mind waiting too much since I got to be with my hubby.
TMI paragraph, skip if you don't want the gritty details
So on Saturday I started cramping and passing tissue/blood clots. Not only have I not had a period since March 30th, I'm not used to having so many big clots or whatever. I was starting to get a little worried, but it settled down, so I just figured I was starting my period.
Derek was excited that I was starting my period and said "it's the end of our troubles!" For some reason I just really felt (and even dreamed) for some reason it wouldn't matter.
Doctor Gosewehr met my hubby and jumped right in. He started drawing a uterus and explaining what the CT scan said. He said the good news is, it is only in the uterus and hasn't spread anywhere else (wooo). Basically none of the explanation was new to me. He said there is this tissue that is in the muscle in the uterus...the official name is Placental Site Trophoblastic Tumor (PSTT) (what he had suspected all along). There is still a decent blood flow to the area and it seems to be embedded. He said the only way to know for sure that it is PSTT is to do a hysterectomy--which we obviously don't want to do.
We told him I started my period and all about it. He said if this had happened a while ago, he might have been more glad to hear it, but with it being embedded, he seems to think it's unlikely that I'll be able to pass it on my own. He said my uterus is fairly large (I always wonder how I'm supposed to take that) so another option would be a uterine wedge resection. He said you can have a pregnancy in half a uterus. So if we took out a quarter of my uterus (the part with the tumor) they could potentially sew it back together and "all would be well." But, there is no guarantee and I could wake up from the surgery with no uterus. So...we're not going that route.
Other options include 3 drugs, 5 drugs, 7 drugs and a second opinion. Basically I've tried 2 drugs so far (Methotrexate and Dactinomycin) and I've shown resistance to both of those. We have to up the game. At the very least we'd add one more drug and I'd be at 3. But most likely I'll be at 5 drugs (luckily not at the 7 drugs). Since it is Tuesday today, we couldn't start until Monday. It will be treatments every day for five days, then a week off, and so on. Yikes. I totally called this is what would happen, nothing really new, but I would need stronger treatment. KNEW IT. I wasn't expecting every day, though. He also said he's going to ask some other Gynecologist Oncologists and see what drug option they vote for--giving them my medical history and personal situation (the fact that we're moving in a month and want to, ya know, have kids). I said GO FOR IT, basically free second opinions from the best. He said he should hear by Thursday or Friday, so call them then and we'll get it all scheduled for Monday. Eeek. Once again, let's hope I don't lose my hair.
He does seem a little worried that I won't be able to find a gynecologist oncologist in Rexburg, but he says we'll figure it out. Especially if we figure out what drugs we're going to use, they can just follow the recipe.
I'm going to try to get lots of hours for my internship in this week because I don't know if I'll be able to work at all on treatment weeks. I think I'm going to have to get another CT scan (or at least an ultrasound) to ensure it is gone, since he said we can't always trust the numbers in the blood for some reason. So we'll see how things go.
Thanks again for all the support. I might be needing it next week.
.
Tuesday, November 11, 2014
Thursday, November 6, 2014
The moment of truth
I'm feeling anxious. Anxious and jealous.
Okay, I'll be honest. I get pretty jealous of all the pregnant/new moms I see EVERYWHERE. I think about how I would be having my baby in just 2 months...that's pretty sad. It's even more sad to me that I know it will be AT THE VERY LEAST 4 months (more like at least 7) until we can start trying to get pregnant again. Not a fan.
Any way.
I had my CT scan, ultrasound, and chest x-ray last Monday (the 27th). I was really grateful Derek got the day off and was able to be with me. The contrast I had to drink was...nasty. I was really nervous, and I'll be honest, a part of me hoped the ultrasound tech would be like... "oh, you're pregnant!" No such luck.
My doc told me to call about a week after to see if they had got my results. No news was good news, but I could still call to double check.
When I went in for my blood draw last week (Thursday), I realized it was my last scheduled appointment so I spoke with the scheduler. She said she would have to get more orders from the doctor and that they hadn't seen the results from my scans yet.
Tuesday came around and I still hadn't heard anything, so I called her. The scheduler was at lunch, so I left a message. She didn't call me back the rest of the day. Wednesday morning my hubby told me I needed to call again because I didn't have my blood draw scheduled or anything.
A few minutes latter the scheduler called me back.
She told me the doctor wanted to meet with me on Tuesday (the 11th) about my scan results and discuss my treatment options. She then proceeded to tell me my time options. That's all she told me. I wish they could at least say "hey listen, no big deal, don't worry about it." Or "hey, it isn't great news, so prepare yourself."
But no, I'm in limbo (as always) until Tuesday. Everyone keeps saying it's probably not a big deal, and they're probably right. But, It's realllly hard for me not to worry. I'm scared. I'm nervous about the vast possibilities it could be. I'm nervous I'll need a stronger chemo treatment. I'm nervous I'll lose my hair. I'm nervous I'll have to wait longer to have a sweet little baby. I'm nervous I'll never be able to have children. I'm just plain nervous.
All I know is I just try not to think about it too much. I know things will work out, I know God has a plan. I'm just a worrier. I need to have more faith and more patience.
In the mean time, my hubby and I are going out tonight. Time with just him and me. I'm excited. I need it. We need it. I'm really blessed to have him, and all the others to support me through this chaotic time.
Okay, I'll be honest. I get pretty jealous of all the pregnant/new moms I see EVERYWHERE. I think about how I would be having my baby in just 2 months...that's pretty sad. It's even more sad to me that I know it will be AT THE VERY LEAST 4 months (more like at least 7) until we can start trying to get pregnant again. Not a fan.
Any way.
I had my CT scan, ultrasound, and chest x-ray last Monday (the 27th). I was really grateful Derek got the day off and was able to be with me. The contrast I had to drink was...nasty. I was really nervous, and I'll be honest, a part of me hoped the ultrasound tech would be like... "oh, you're pregnant!" No such luck.
My doc told me to call about a week after to see if they had got my results. No news was good news, but I could still call to double check.
When I went in for my blood draw last week (Thursday), I realized it was my last scheduled appointment so I spoke with the scheduler. She said she would have to get more orders from the doctor and that they hadn't seen the results from my scans yet.
Tuesday came around and I still hadn't heard anything, so I called her. The scheduler was at lunch, so I left a message. She didn't call me back the rest of the day. Wednesday morning my hubby told me I needed to call again because I didn't have my blood draw scheduled or anything.
A few minutes latter the scheduler called me back.
She told me the doctor wanted to meet with me on Tuesday (the 11th) about my scan results and discuss my treatment options. She then proceeded to tell me my time options. That's all she told me. I wish they could at least say "hey listen, no big deal, don't worry about it." Or "hey, it isn't great news, so prepare yourself."
But no, I'm in limbo (as always) until Tuesday. Everyone keeps saying it's probably not a big deal, and they're probably right. But, It's realllly hard for me not to worry. I'm scared. I'm nervous about the vast possibilities it could be. I'm nervous I'll need a stronger chemo treatment. I'm nervous I'll lose my hair. I'm nervous I'll have to wait longer to have a sweet little baby. I'm nervous I'll never be able to have children. I'm just plain nervous.
All I know is I just try not to think about it too much. I know things will work out, I know God has a plan. I'm just a worrier. I need to have more faith and more patience.
In the mean time, my hubby and I are going out tonight. Time with just him and me. I'm excited. I need it. We need it. I'm really blessed to have him, and all the others to support me through this chaotic time.
Thursday, October 9, 2014
Doctor's Visits with a Side of Possums
Lately I've been driving around and seeing all these dead possums! I didn't even know there were possums in these parts. Apparently only dead ones, because I have yet to see one alive. In my opinion, they're pretty gross, so I don't mind.
Well I know you're all just dying to get a medical update, so even though it isn't filled with many answers (though still a novel), I figured I'd let people know what I know.
I think the last update I wrote about was just after my first treatment. So I'll start about there.
I went in the next week to get my blood drawn, as per usual. I found out I have a $20 copay even for lab work (which I need to call my insurance to double check, since it is usually FREE). That is killing me. $20 every week just for them to suck my blood. I'm a poor college student, just sayin...
The next week I went in for treatment #2. I was supposed to get my blood work done, meet with the doctor, and then have my treatment. I got taken back and the nurse asked me a few questions and then I waited for the doctor. The PA came in and basically talked to me about how my HCG was at 148 the day I got my first treatment and it was at 147 one week later. She said that obviously it didn't really change much, so we might need to change my medication or add to it. She said that was basically all she had to say and that she would go see if doctor Gosewehr had anything else he wanted to say. I was a little annoyed because I wanted to speak to HIM, but whatever.
She came back and took me to the treatment room. I got settled and they started hooking me up. I notice Doctor Gosewehr at the door of the treatment room and we made eye contact. Somehow I knew he was coming to talk to me. He told them to turn off my IV (at this point it was basically saline and nausea meds before my actual treatment). I was a little startled by that. Then he starts explaining to me how, although very rare, sometimes the body creates an antibody to HCG. He said when we run the blood test, basically it looks for this certain thing in the blood with a certain pattern in it. Even more rare with today's technology, sometimes the test can be picking up the antibody because it has a very similar pattern. He used the analogy of a shadow, it looks and acts like the real thing, but isn't the real thing. He said he would like to do a urine pregnancy test because the antibody isn't in the urine so that can be a good indicator if it is the antibody or not.
Well I was shown to the bathroom and gave them a sample and went back to my tan chair. At this point my treatment nurse came up to me and we talked about whether we should start the treatment now or what. So she went to go find Doctor Gosewehr. Just as she left, in he walks. I told him she went to look for him and he said "I know, I'm hiding from her" and he proceeds to hide behind my chair as she is walking over to us. She said to him, "your black shirt doesn't blend in very well with the green chair!" I furrowed my brow... "Green? I thought the chairs were tan this whole time!" They both laughed at my colorblindness.
Well he told me the urine test was negative. He said it could be negative for 3 reasons. 1: my urine was too diluted with water and the saline. They didn't seem to think that was it. 2. My numbers had dropped considerably and so they wouldn't be detected by the urine test (that would be awesome). 3. It was the antibody. We decided to go ahead with the treatment and I was supposed to call back that night to see what the results were. I was also supposed to go in the next day for my chest x-ray and CT scan, but he said we'll hold off on those because he didn't want me to do an unnecessary, annoying test if we're basically just chasing a ghost.
Well apparently I had dropped to 65! That was great news! (though I was confused as to why my urine test was negative, since he made it seem like the antibody would stay pretty level).
A week of bliss.
The next week I went in for my blood draw. The next day I missed a call from Doctor Gosewehr where he informed me my levels had jumped to 116--almost double. He said they were going to run some more tests and if I hadn't heard from them by Tuesday that I should call in. Tuesday came and I hadn't received a call, so I called. I spoke with his nurse, and really I didn't receive any new information, he just said I would need to keep getting treatment until my levels were <5 for two checks. He asked if I had had any other symptoms. I told him I had had some very light spotting, but that it didn't seem like it was my period. He seemed a little taken aback, and said he would talk to the doctor.
I was starting to feel pretty anxious. I never like to hear my numbers jump. I don't know what it means and it makes me fear for the future and makes me worry about how much longer all this will last.
Well, today I went in for treatment #3. I noticed on my schedule that they had miss-scheduled me. I am supposed to have lab work, doctor visit, treatment. Somehow they accidentally missed the doctor visit schedule and scheduled me for two treatments. I wasn't happy because I wanted to hear what he was thinking! They took me back to the treatment room and I told them I had questions. They said, we'll wait on your treatment and we'll get you in to see him.
Oh, I forgot to mention that my grandma had an appointment at the same office at the same time. So her and my mom were there. We left my Grandma in the treatment room and Mom and I went back to wait for the doctor. We waited and waited. I kept thinking we should have just got my treatment started and he could've just come found me when he was ready.
Finally he came in and started talking about the stuff I already knew. He said they did some more tests to check about the antibody and they all came back saying it didn't seem to be the antibody, but that there was still some pregnancy tissue somewhere. He always reminds me that we're not worried about a big threat right now. Today he used the analogy that it isn't like I have some hooded man holding a knife to my neck. It's more like there is a 2 year old across the room with a pin. Now, we still don't want to get pricked with the pin, and it could have some disease on the needle, but really its not a big threat, we just want to take care of it, especially since Derek and I want to get pregnant soon (well more like...already be pregnant, but oh well..) He asked about our birth control usage and said he didn't want us making his job harder than it already is... We've been doing our best, but I guess there is always a chance you can get pregnant. As much as I want to get pregnant, it would break my heart because all the junk they're putting in me would be so harmful to that little guy. I'm pretty sure that isn't it. Plus with the spotting, it wouldn't be good news anyway. He talked about how we wanted to take my case to a local (and then decided a national one as well) board? I can't remember what he called it, but basically wanted to put it out there and see if other doctors have had similar situations and what they've done and such. Good thinking, I thought. The more help, the better.
Anyway, he said we're definitely going to go forward with my scans now. He said he wanted to do an ultrasound as well so we can get a really good picture of my uterus and I'll have my chest x-ray and CT scan. Basically he said we're checking from head to toe to make sure we aren't missing anything. He doubled checked with me that I haven't had a real period since all of this, and asked about how regular they were before..and we talked about how I've been spotting for the past few days, but it really doesn't seem to be a period (sorry if this is TMI, but I'm past that point..) He didn't seem like that was a great sign... I don't know. With the spotting it makes me more sure it isn't the slight possibility that I somehow got pregnant. Not that the alternative is all that great either... We'll just wait and see what my levels were today and hopefully I'll be having all my scans next week and we'll have a much better idea of what we're up against. That brings me a little bit of comfort for the time being.
Oh! And he said I didn't have to have my treatment today! (This made the waiting worth it!) He said it starts tearing on your body and we might as well wait to see how everything looks. He talked about how we tried something minor (methotrexate) and then we've been trying something a little more potent (my current dactinomycin), and that the next step would be here (he raised his hand a much higher distance) and mentioned that we don't want to go to that step if we don't have to, but so far it doesn't seem like the others are doing the job.
Hopefully we don't have to go to that big step and my body starts figuring it out. Thanks for the continued prayers and support! We got a DELICIOUS fruit basket from Derek's siblings this week..HUGE thank you! And on the bright side, I won't be feeling all nauseous for the next few days! WAHOO!
Thursday, September 11, 2014
Phone Calls That Make You Cry
This week has been one of the biggest roller coasters of my life. A lot of new information, so bear with me. (But then again, I guess if you're reading this, you've probably been keeping up on my situation, so maybe you're interested...) If you get bored of reading, please skip to the end and at least read the last two paragraphs!
Phone call 1: Dr. Bair called me Tuesday (the 9th). He told me that after my shot of methotrexate, my levels should drop by 25-30%, but instead they went up--what we had feared would happen all along. He said it wasn't a big jump up by any means, but the fact that it went up at all, especially after the chemo shot, was extremely disconcerting. He talked about how things can spread to the lungs and liver and some other stuff, and brought up how something with my liver levels was weird with one of my previous checks, but I'm not really sure what he's talking about (I would be having that checked again the next day). He said I would likely need to have like CT scans and my chest looked at. He reminded me the numbers are still really small, so it's really unlikely that they'll show anything, but that I'd probably need them. He said he felt it was best for me to see the gynecologic oncologist from here on out. He told me he would call him and that the oncology office would call me.
At this point I was seriously starting to freak out. Going up is NOT a good sign, and I just wanted to be done and move past all of this, but this news made me feel like I just had to start all over with everything. I cried. I talked to Derek, and I just kept thinking about the worst and thinking about my blood draw the next morning, worrying it would have an even bigger jump.
Phone call 2: Later (actually on the way to take Grandma to, what I later learned, would be the same office) the oncologist called me and basically it just seemed like he was making sure it was okay to set up an appointment to meet with me. He said it isn't cancer (I'm not sure how they can be so sure at this point, but whatever) and that it isn't the THREAT they're so concerned about, it's the persistence of my tissue/hormones/whatever. He said we'll either be adding another chemo treatment with the methotrexate or replacing it with this new treatment. He didn't mention anything about scans or anything. I'm still going in tomorrow to have my blood drawn (at the OB/GYN, not the oncologists). The oncologist said that his "people" would be calling me back today to schedule the appointment and that if they didn't call by the end of the day, to call his office. I asked him if I would still be able to have children and he reassured me that this will NOT affect that. The one piece of relief I got.
Well his office never called, so when I got back from my internship, I called Dr. Bair's office to get the oncology number and then called them. His scheduler wasn't even there any more! I was kinda frustrated, but then I got a reminder call about an appointment for Thursday (today) at 11:30. Apparently they just decided not to ask me when works best. I'll be at my internship at that time, but luckily it is literally across the street from the doctor, so oh well.
Phone call 3/office visit: Wednesday morning I received a call from Dr. Gosewehr's scheduler (the oncologist) and said she'd like to schedule all my appointments through October, and asked me to come in since I would be right by there for my blood draw. Well, I got my blood taken and then went to meet with her. She starts listing off all these dates and appointments. Treatments. EIGHT treatments were scheduled. Every week I would have a treatment--starting tomorrow. Every other week I would meet with the doctor and evaluate where things are at. When I left the office I had a melt down. I couldn't stop crying. I wasn't ready for all of this, I didn't want stupid chemo for 2 months and all the restrictions that come with it. I didn't want any of this.
I skyped with my parents and it calmed me down some, but I still was feeling cranky about the whole situation. I'm only 21 years old, and I'm not ready to be getting chemo weekly (I don't think I'd ever be ready, but still).
Phone call 4: Dr. Bair called yesterday. I saw his name on the phone and anticipated him to tell me they shot up even more and blah blah blah. When I hear the words "152, they went down more than half!" I felt a rush of relief. He said he was so excited he wanted to get me the results as soon as he knew. He said he felt very optimistic with that drop--and for the most part so do I. He said I would still finish things out with Dr. Gosewehr, and he would counsel me on when I can get pregnant again, but that this was a great sign.
I was SO excited to hear they had dropped, but I guess I'm still worried because we've had drops before and then it really mellows out. Hopefully that won't be the case this time and maybe I'll be back to "normal" quicker than expected. I guess his comment about counselling with us about when we can get pregnant and how we usually want to wait a little longer with this got me bummed out. But, I know it will be so worth it when the time comes. What a roller coaster this year has been. Once again, I'm hopeful this is the beginning of the end...for real this time. Well this is how I was feeling...until today.
Today I went to my internship and then got to the oncologist's office a little before 11:30. I was anxious for Derek to get there. They called me back and took my blood. I asked what all they were testing.They did another CBC, something else that tests like....everything including liver and kidney functions, and then my HCG levels. Then I went back out to the lobby and Derek finally got there as I was filling out a bunch of paperwork. We waited. And waited. When it was like 12:15 I finally went up there are asked if they knew how much longer it would be. She said if I hadn't gotten called back in 15 more minutes, to let her know. Well 20 went by so I went up and they finally took me back. The nurse took my weight, blood pressure, and temperature and then took us back to this small, quaint room with comfy chairs and a couch. She said the PA would come in, and then the doctor. We WAITED. Fiiiiinally the PA came in and asked us some very brief questions, then said Docter Gosewehr would be in shortly. When 1:20 came around Derek finally said that he couldn't wait any longer and had to get back to work. I understood but I was really bummed that he wouldn't be with me when the docter came to talk.
A little while later he finally came in. Most of what he said kinda went over my head. Important things: I'll still be able to get pregnant, but I'm supposed to wait 6 months after my last treatment (I wanted to cry when he told me that, but I held it together). He told me they were switching my medication to LSNFOSJDNFLSDN (every time he said it I could not understand him but later learned it is dactinomycin)... And that I would have it every other week, and continue to have my weekly blood tests. He said I'd keep getting it until my levels reached 0 and then I think he said I'll have two more treatments after that. Booo. I was not excited. He gave me a lot of information that I don't really remember...hence me wanting someone there with me, but oh well. He did a pelvic exam and told me that everything looked normal. He said I would be scheduled with CT scans of my abdomen and pelvis and have a chest xray. He said that it isn't too serious now, but they need to check everything so they don't miss something and that it has the potential to get serious. Honestly, it relieves me they're doing the scans. I would rather have them done and know I'm clear, rather than keep waiting and miss something.
Anyway, then I got taken to the treatment room. Doctor Gosewehr and the treatment givers were all really nice and super funny. It was such a weird feeling in the the treatment room. There were all these big, tan, leather chairs with people everywhere hooked up to IVs. I can safely say I was the youngest person in the room (Doctos Gosewehr told me most of his patients are in their 80's so when we talked about contraceptives (which ps. he told me condoms weren't good enough, but I'm pretty sure I'm not allowed to use hormone methods...so what do I use?) he said he wasn't really up to date on those since none of his patients really have to worry about them). When I brought my grandma to the office on Tuesday I wondered what it was like back there with people getting treatment. Little did I know that two days later I would be one of them. I kept looking around at all these people and wondering what their lives were like and what stage in their treatment they were at. Some were bald, some looked really sick, and others looked completely "normal". When I was first sitting down a couple walked in and asked me if some other lady was with me, I told them I was alone and the husband said "well now she's with you! You aren't alone!" (referring to his wife, who is a doctor, who was getting treatment). It was really sweet.
Well I got my treatment and then finally at nearly 4 I was able to come home. I've had a headache and I was just hit with some decent nausea. I sure hope the drugs they give me work and that I don't feel like crap for the next who knows how long.
I just have to say, with all of this, I have been so blown away with the love and prayers Derek and I have received on our behalf. It means the word to me. I was thinking about my friend from my previous ward, Nikki, and thought I should talk to her about her chemo experience. When I got on my computer I had a great, long message from her. I seriously wanted to cry. I was blown away that we both had received the prompting from the Lord to talk to each other and so grateful that she followed that prompting. I'm so glad that even though things kinda suck right now, the Lord still lets me know that He is aware of me and is looking out for me. I'm blessed, even if things aren't ideal. We all are!
*****IMPORTANT LAST NOTE!!!!!*****
I need to stay any from anyone who has had a fever within the last two days (from when I see them)...and probably people who have been in contact with feverish people, to be safe. SOOO...warn me if you have a fever, or just shoot me a message instead of seeing me. But I love company. And would actually love if someone wanted to come with me in two weeks when I meet with the doctor and have my next treatment, but warning! It could take all day...
Phone call 1: Dr. Bair called me Tuesday (the 9th). He told me that after my shot of methotrexate, my levels should drop by 25-30%, but instead they went up--what we had feared would happen all along. He said it wasn't a big jump up by any means, but the fact that it went up at all, especially after the chemo shot, was extremely disconcerting. He talked about how things can spread to the lungs and liver and some other stuff, and brought up how something with my liver levels was weird with one of my previous checks, but I'm not really sure what he's talking about (I would be having that checked again the next day). He said I would likely need to have like CT scans and my chest looked at. He reminded me the numbers are still really small, so it's really unlikely that they'll show anything, but that I'd probably need them. He said he felt it was best for me to see the gynecologic oncologist from here on out. He told me he would call him and that the oncology office would call me.
At this point I was seriously starting to freak out. Going up is NOT a good sign, and I just wanted to be done and move past all of this, but this news made me feel like I just had to start all over with everything. I cried. I talked to Derek, and I just kept thinking about the worst and thinking about my blood draw the next morning, worrying it would have an even bigger jump.
Phone call 2: Later (actually on the way to take Grandma to, what I later learned, would be the same office) the oncologist called me and basically it just seemed like he was making sure it was okay to set up an appointment to meet with me. He said it isn't cancer (I'm not sure how they can be so sure at this point, but whatever) and that it isn't the THREAT they're so concerned about, it's the persistence of my tissue/hormones/whatever. He said we'll either be adding another chemo treatment with the methotrexate or replacing it with this new treatment. He didn't mention anything about scans or anything. I'm still going in tomorrow to have my blood drawn (at the OB/GYN, not the oncologists). The oncologist said that his "people" would be calling me back today to schedule the appointment and that if they didn't call by the end of the day, to call his office. I asked him if I would still be able to have children and he reassured me that this will NOT affect that. The one piece of relief I got.
Well his office never called, so when I got back from my internship, I called Dr. Bair's office to get the oncology number and then called them. His scheduler wasn't even there any more! I was kinda frustrated, but then I got a reminder call about an appointment for Thursday (today) at 11:30. Apparently they just decided not to ask me when works best. I'll be at my internship at that time, but luckily it is literally across the street from the doctor, so oh well.
Phone call 3/office visit: Wednesday morning I received a call from Dr. Gosewehr's scheduler (the oncologist) and said she'd like to schedule all my appointments through October, and asked me to come in since I would be right by there for my blood draw. Well, I got my blood taken and then went to meet with her. She starts listing off all these dates and appointments. Treatments. EIGHT treatments were scheduled. Every week I would have a treatment--starting tomorrow. Every other week I would meet with the doctor and evaluate where things are at. When I left the office I had a melt down. I couldn't stop crying. I wasn't ready for all of this, I didn't want stupid chemo for 2 months and all the restrictions that come with it. I didn't want any of this.
I skyped with my parents and it calmed me down some, but I still was feeling cranky about the whole situation. I'm only 21 years old, and I'm not ready to be getting chemo weekly (I don't think I'd ever be ready, but still).
Phone call 4: Dr. Bair called yesterday. I saw his name on the phone and anticipated him to tell me they shot up even more and blah blah blah. When I hear the words "152, they went down more than half!" I felt a rush of relief. He said he was so excited he wanted to get me the results as soon as he knew. He said he felt very optimistic with that drop--and for the most part so do I. He said I would still finish things out with Dr. Gosewehr, and he would counsel me on when I can get pregnant again, but that this was a great sign.
I was SO excited to hear they had dropped, but I guess I'm still worried because we've had drops before and then it really mellows out. Hopefully that won't be the case this time and maybe I'll be back to "normal" quicker than expected. I guess his comment about counselling with us about when we can get pregnant and how we usually want to wait a little longer with this got me bummed out. But, I know it will be so worth it when the time comes. What a roller coaster this year has been. Once again, I'm hopeful this is the beginning of the end...for real this time. Well this is how I was feeling...until today.
Today I went to my internship and then got to the oncologist's office a little before 11:30. I was anxious for Derek to get there. They called me back and took my blood. I asked what all they were testing.They did another CBC, something else that tests like....everything including liver and kidney functions, and then my HCG levels. Then I went back out to the lobby and Derek finally got there as I was filling out a bunch of paperwork. We waited. And waited. When it was like 12:15 I finally went up there are asked if they knew how much longer it would be. She said if I hadn't gotten called back in 15 more minutes, to let her know. Well 20 went by so I went up and they finally took me back. The nurse took my weight, blood pressure, and temperature and then took us back to this small, quaint room with comfy chairs and a couch. She said the PA would come in, and then the doctor. We WAITED. Fiiiiinally the PA came in and asked us some very brief questions, then said Docter Gosewehr would be in shortly. When 1:20 came around Derek finally said that he couldn't wait any longer and had to get back to work. I understood but I was really bummed that he wouldn't be with me when the docter came to talk.
A little while later he finally came in. Most of what he said kinda went over my head. Important things: I'll still be able to get pregnant, but I'm supposed to wait 6 months after my last treatment (I wanted to cry when he told me that, but I held it together). He told me they were switching my medication to LSNFOSJDNFLSDN (every time he said it I could not understand him but later learned it is dactinomycin)... And that I would have it every other week, and continue to have my weekly blood tests. He said I'd keep getting it until my levels reached 0 and then I think he said I'll have two more treatments after that. Booo. I was not excited. He gave me a lot of information that I don't really remember...hence me wanting someone there with me, but oh well. He did a pelvic exam and told me that everything looked normal. He said I would be scheduled with CT scans of my abdomen and pelvis and have a chest xray. He said that it isn't too serious now, but they need to check everything so they don't miss something and that it has the potential to get serious. Honestly, it relieves me they're doing the scans. I would rather have them done and know I'm clear, rather than keep waiting and miss something.
Anyway, then I got taken to the treatment room. Doctor Gosewehr and the treatment givers were all really nice and super funny. It was such a weird feeling in the the treatment room. There were all these big, tan, leather chairs with people everywhere hooked up to IVs. I can safely say I was the youngest person in the room (Doctos Gosewehr told me most of his patients are in their 80's so when we talked about contraceptives (which ps. he told me condoms weren't good enough, but I'm pretty sure I'm not allowed to use hormone methods...so what do I use?) he said he wasn't really up to date on those since none of his patients really have to worry about them). When I brought my grandma to the office on Tuesday I wondered what it was like back there with people getting treatment. Little did I know that two days later I would be one of them. I kept looking around at all these people and wondering what their lives were like and what stage in their treatment they were at. Some were bald, some looked really sick, and others looked completely "normal". When I was first sitting down a couple walked in and asked me if some other lady was with me, I told them I was alone and the husband said "well now she's with you! You aren't alone!" (referring to his wife, who is a doctor, who was getting treatment). It was really sweet.
Well I got my treatment and then finally at nearly 4 I was able to come home. I've had a headache and I was just hit with some decent nausea. I sure hope the drugs they give me work and that I don't feel like crap for the next who knows how long.
I just have to say, with all of this, I have been so blown away with the love and prayers Derek and I have received on our behalf. It means the word to me. I was thinking about my friend from my previous ward, Nikki, and thought I should talk to her about her chemo experience. When I got on my computer I had a great, long message from her. I seriously wanted to cry. I was blown away that we both had received the prompting from the Lord to talk to each other and so grateful that she followed that prompting. I'm so glad that even though things kinda suck right now, the Lord still lets me know that He is aware of me and is looking out for me. I'm blessed, even if things aren't ideal. We all are!
*****IMPORTANT LAST NOTE!!!!!*****
I need to stay any from anyone who has had a fever within the last two days (from when I see them)...and probably people who have been in contact with feverish people, to be safe. SOOO...warn me if you have a fever, or just shoot me a message instead of seeing me. But I love company. And would actually love if someone wanted to come with me in two weeks when I meet with the doctor and have my next treatment, but warning! It could take all day...
Tuesday, September 2, 2014
Adding a New Word to my Vocab: Chemotherapy
I walked into my room this morning after getting my weekly blood draw, planning to make my bed and start the laundry. I looked at Derek's pillow and wondered why it was in such a weird position. Then I remembered. He knows I like to have his body pressed against my back while I'm sleeping. When he left for work this morning, he moved his pillow there to give me some comfort while he was away. What a sweet husband I have.
Later in the day I realized that I had a missed call from my OB/GYN's office. I listened to the voicemail to find out it was the doctor himself....not too common that he is the one to call me. It said to call him back on his direct line (gave me the number) and that he needed to talk to me soon.
My heart started racing, my breathing sped up, my stomach dropped, my hands got cold and sweaty.I knew it couldn't be good news if he was in such a rush to talk to me. Had my levels gone up? Were things really bad? Was I going to be okay? I called him back and he told me he was with a patient but would call me in about 10 minutes. I laid in bed, waiting and worrying for at least 30 minutes. Finally the phone rang; I felt like I could throw up.
He talked about how it had been 3 months since my D&C and that although my levels were still dropping, he was concerned. He consulted with his gynecologist/oncologist buddy and they didn't feel comfortable just continuing on the plan we had (to have my levels checked weekly until they went to 0), they were going down too slowly. Although he told me it was not technically "cancer" by definition, the cells were not acting normally and we needed to "aggressively eradicate" them. He told me I would need to get a shot called Methotrexate--chemotherapy. He said that the tissue was so small you probably wouldn't even be able to pick it up on an ultrasound or an MRI, but it still needed to be taken care of. He said it should only take one shot and my HCG levels should go down rapidly after that, but I'll have to get them checked again next week and could need a second shot. He said it will be a low dosage, so I shouldn't have too many side-effects, but it could cause nausea, vomiting, tiredness, and dry mouth (YAY!) With my luck, it'll make me as sick as a dog.
I have to go in tomorrow morning to have my blood drawn to do a CBC, wait at the doctor's office for like an hour to an hour and a half while they get the results, and then I would get my nice cancer-fighting shot.
A word to the wise, don't look medical stuff up on the internet...it just makes you freak out. A lot.
I'm sure things will be fine, and hopefully this is the beginning of the end of all my medical difficulties (or at least the current ones).
All I have to say is...I better still have my hair after this is done!
Later in the day I realized that I had a missed call from my OB/GYN's office. I listened to the voicemail to find out it was the doctor himself....not too common that he is the one to call me. It said to call him back on his direct line (gave me the number) and that he needed to talk to me soon.
My heart started racing, my breathing sped up, my stomach dropped, my hands got cold and sweaty.I knew it couldn't be good news if he was in such a rush to talk to me. Had my levels gone up? Were things really bad? Was I going to be okay? I called him back and he told me he was with a patient but would call me in about 10 minutes. I laid in bed, waiting and worrying for at least 30 minutes. Finally the phone rang; I felt like I could throw up.
He talked about how it had been 3 months since my D&C and that although my levels were still dropping, he was concerned. He consulted with his gynecologist/oncologist buddy and they didn't feel comfortable just continuing on the plan we had (to have my levels checked weekly until they went to 0), they were going down too slowly. Although he told me it was not technically "cancer" by definition, the cells were not acting normally and we needed to "aggressively eradicate" them. He told me I would need to get a shot called Methotrexate--chemotherapy. He said that the tissue was so small you probably wouldn't even be able to pick it up on an ultrasound or an MRI, but it still needed to be taken care of. He said it should only take one shot and my HCG levels should go down rapidly after that, but I'll have to get them checked again next week and could need a second shot. He said it will be a low dosage, so I shouldn't have too many side-effects, but it could cause nausea, vomiting, tiredness, and dry mouth (YAY!) With my luck, it'll make me as sick as a dog.
I have to go in tomorrow morning to have my blood drawn to do a CBC, wait at the doctor's office for like an hour to an hour and a half while they get the results, and then I would get my nice cancer-fighting shot.
A word to the wise, don't look medical stuff up on the internet...it just makes you freak out. A lot.
I'm sure things will be fine, and hopefully this is the beginning of the end of all my medical difficulties (or at least the current ones).
All I have to say is...I better still have my hair after this is done!
Tuesday, August 26, 2014
The Waiting Game
So much of life is spent waiting.
Waiting in a line; waiting at the doctor's office; waiting to turn 16; waiting for a date; waiting to get married, to have children. We look forward to certain times in our lives--when things will finally be how we want them and we'll be happy. I've contemplated this idea for some time. A man once told me that the best advice he ever received--something that really changed him--was to be happy wherever you are in life. Those events or times you look forward to, they will come; but find happiness and joy now. He told me he has really tried to live by that and it has enabled him to have a full and rich life.
With that said, I clearly need to change some things.
My life seems to be a waiting game. I'm waiting to get a job, waiting for my internship to start, waiting for Derek to get home, waiting for my darn stubborn hormone levels to go down, and waiting until we can try for a baby again. (I guess many of you probably have no idea what I'm talking about. If you're a little confused try reading this, if you're completely shocked and confused then follow the previous link, but give the hyperlink in that post a read as well (the hyperlink is sad experience, I think).) Things seem to be changing very slowly with me, medically speaking. Which, to some degree is comforting given all that could happen that would rapidly alter my reality. But still, it makes me fear the cause of my very slow return to normalcy and how it will affect things in the future. I yearn for my body to respond normally and to no longer have to sit and wait for 30 minutes to over an hour just to have my blood drawn in less than a minute...every...single....week. I yearn for the time when Derek and I can create a precious new life and to finally hold that bundle of perfection in our arms. But today, I must listen to those words and stop waiting.
Today is a beautiful day to start living.
Waiting in a line; waiting at the doctor's office; waiting to turn 16; waiting for a date; waiting to get married, to have children. We look forward to certain times in our lives--when things will finally be how we want them and we'll be happy. I've contemplated this idea for some time. A man once told me that the best advice he ever received--something that really changed him--was to be happy wherever you are in life. Those events or times you look forward to, they will come; but find happiness and joy now. He told me he has really tried to live by that and it has enabled him to have a full and rich life.
With that said, I clearly need to change some things.
My life seems to be a waiting game. I'm waiting to get a job, waiting for my internship to start, waiting for Derek to get home, waiting for my darn stubborn hormone levels to go down, and waiting until we can try for a baby again. (I guess many of you probably have no idea what I'm talking about. If you're a little confused try reading this, if you're completely shocked and confused then follow the previous link, but give the hyperlink in that post a read as well (the hyperlink is sad experience, I think).) Things seem to be changing very slowly with me, medically speaking. Which, to some degree is comforting given all that could happen that would rapidly alter my reality. But still, it makes me fear the cause of my very slow return to normalcy and how it will affect things in the future. I yearn for my body to respond normally and to no longer have to sit and wait for 30 minutes to over an hour just to have my blood drawn in less than a minute...every...single....week. I yearn for the time when Derek and I can create a precious new life and to finally hold that bundle of perfection in our arms. But today, I must listen to those words and stop waiting.
Today is a beautiful day to start living.
Rambling Medical Update
After my sad experience and all that transpired, we tried to move on and waited until my post-op appointment, at which point I was told I was still testing positive so they would need to check my HCG levels (the hormone the placenta gives off to tell your body you're pregnant). They didn't seem too concerned at this point because my post-op was a little earlier than most are. We spoke with the doctor and he said normally after a D&C, the HCG goes to 0 within 2 weeks. I was a few days shy of 2 weeks, but they'd check my levels and see me in a week or so. Turns out my hormone levels were somewhere in the 7,000's (if I'm remembering correctly). Needless to say, this was unexpected. My doctor was pretty worried and I had to come in to get them checked again after the weekend (which they dropped hardly anything, and then they very next day). We had to stay at the doctor's office until the got the results--we were there for like 4 hours. They had barely gone down and my OB-GYN was talking with an oncologist in Salt Lake to see what we should do and had a shot on hand that they might have to give me if things weren't going like they should. He told us the problem is that these elevated levels could be a sign of a tumor or cancer.
Over the next weeks I was going to get my blood drawn ever week to week and a half. My levels continued to go down, but very very slowly. I had a few ultrasounds and they said I had a small piece of tissue in my lining that was a normal size and didn't think it should be anything to be concerned about and my body should sluff it off. It came time for us to be moving soon so I wanted to talk to the doctor again to see what we should do when we move. He then seemed to get worried again because my levels were still in the 3,000's and it had been like 6 or 7 weeks since the D&C. He thought we might need to have another D&C and do some tests on the tissue to make sure it wasn't cancerous. I started to panic...I feared things would be bad and I feared I would never be able to have kids. Luckily, he said my level had cut in half--exactly what we wanted, and that I should be okay to go to Canada for our open house and be in Oregon with my new doctor within a week to 10 days to have them checked again. Even though he seemed less frantic, he was very serious as he told us I can't just drop off the face of the Earth and that I HAD to keep having my hormone checked. He also made it very clear he needed to talk directly to my new doctor to inform him of everything that has happened.
Anyway, we got to Oregon and had my levels checked....again. They seemed to have plateaued as they were in the 1,000 range for like three different blood draws after that cut in half. But they then dropped to 800 something and then to 600 something. I saw my new doctor and he said that the tissue is most likely still a small piece of placenta that is giving off HCG, but that it is getting weaker, which is why the levels are going down. But, just as before, we have to keep watching it in case anything changed. Basically it wasn't anything new...exceeeept...my first OB told us we had to wait to try to get pregnant again for 3 cycles, so we were hoping to be able to start trying in September. Then, with all of this junk, I still haven't had my period so I was getting discouraged because our waiting time hasn't even officially started. BUT my new OB said we can try after two cycles, so that dang thing needs to come again. I go in again today (I actually really need to go shower so I can make it on time), and hopefully things are still at least moving in the right direction. My body needs to figure it out!
Over the next weeks I was going to get my blood drawn ever week to week and a half. My levels continued to go down, but very very slowly. I had a few ultrasounds and they said I had a small piece of tissue in my lining that was a normal size and didn't think it should be anything to be concerned about and my body should sluff it off. It came time for us to be moving soon so I wanted to talk to the doctor again to see what we should do when we move. He then seemed to get worried again because my levels were still in the 3,000's and it had been like 6 or 7 weeks since the D&C. He thought we might need to have another D&C and do some tests on the tissue to make sure it wasn't cancerous. I started to panic...I feared things would be bad and I feared I would never be able to have kids. Luckily, he said my level had cut in half--exactly what we wanted, and that I should be okay to go to Canada for our open house and be in Oregon with my new doctor within a week to 10 days to have them checked again. Even though he seemed less frantic, he was very serious as he told us I can't just drop off the face of the Earth and that I HAD to keep having my hormone checked. He also made it very clear he needed to talk directly to my new doctor to inform him of everything that has happened.
Anyway, we got to Oregon and had my levels checked....again. They seemed to have plateaued as they were in the 1,000 range for like three different blood draws after that cut in half. But they then dropped to 800 something and then to 600 something. I saw my new doctor and he said that the tissue is most likely still a small piece of placenta that is giving off HCG, but that it is getting weaker, which is why the levels are going down. But, just as before, we have to keep watching it in case anything changed. Basically it wasn't anything new...exceeeept...my first OB told us we had to wait to try to get pregnant again for 3 cycles, so we were hoping to be able to start trying in September. Then, with all of this junk, I still haven't had my period so I was getting discouraged because our waiting time hasn't even officially started. BUT my new OB said we can try after two cycles, so that dang thing needs to come again. I go in again today (I actually really need to go shower so I can make it on time), and hopefully things are still at least moving in the right direction. My body needs to figure it out!
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