I apologize now that this post is probably not going to be as positive and hopeful as I have been striving to be of late.
I haven't written in a few days simply because I haven't had a lot of super positive things to say. I have been tired and grumpy, sad and scared. Part of me feels broken, but I feel unable to attend to that part, so it just sits there, not really getting worse, but not getting better either. It's kind of like a broken side mirror on a car, just hanging there limply, not causing any more direct damage, but much like not having money to fix a broken side mirror, I feel I do not have the resources to attend to this broken part of myself. Perhaps resources is the wrong word. Maybe it is more of a lack of energy, motivation, or mental clarity, but I guess those are types of resource as well.
People have asked me lately how I am doing and at times my answer has been that I feel weary. This is a weariness I have never experienced, one that affects my body, mind, and soul. Each day has some ups and downs to be sure, I just wish the ratio of ups to downs was much more in favor of the ups.
Sunday, January 27, 2013
Thursday, January 24, 2013
Sleeping in yet another different "bed"
I just realized after writing that title that it could be taken a few different ways.... Hopefully anyone who knows me would know that I have been sleeping on "beds" of chairs and couches quite a bit over the last few months, and that I mean that I am going to be sleeping on another this evening. Why am I not sleeping in my bed at home? Because this morning my love moved to the hospice facility Trillium Woods, at least for the time being. My love's nausea came back in full force yesterday and brought along its friend, excruciating pain. My poor love was miserable at home, but also rather stubborn and was reluctant to take additional medications or try other methods of managing the nausea and pain. My love was interested in coming to Trillium yesterday for symptom management, but sadly there were no open beds at the facility. Luckily, one opened up today and my love was here at Trillium by 10:30 this morning. By changing the dosage of one medication and adding a different med for pain, my love's pain and nausea decreased this afternoon. So yeah, that's where we are, so I'll be sleeping either in a recliner or on a pull-out sofa this evening. As far as how things are going, it is hard to say. My love's pain is being persistant and it is agonizing to see someone you love so much suffer and not be able to do much to help. I can call the nurse, and they can try to tame it with medication but sadly it tends to put up a fight.
The chaplain asked me a question today, and I had real appreciation for how he phrased it. He said, "I realize this is kind of like saying, 'Aside from all that, Mrs. Lincoln, how was the play?' But how are you doing?" I felt that it was a really great way to ask that right now, and of course the Lincoln reference was appreciated :). When he asked that question, this morning as I was on my way out the door to pick up a mushroom and cheese pizza that sounded good to my love, I was able to answer him honestly that I was doing well. Tonight my answer would be more along the lines of "I'm hanging in there..." but I suppose that's pretty normal. I'm tired and stressed, but hanging in there. Looking forward to my therapy session tomorrow.
The chaplain asked me a question today, and I had real appreciation for how he phrased it. He said, "I realize this is kind of like saying, 'Aside from all that, Mrs. Lincoln, how was the play?' But how are you doing?" I felt that it was a really great way to ask that right now, and of course the Lincoln reference was appreciated :). When he asked that question, this morning as I was on my way out the door to pick up a mushroom and cheese pizza that sounded good to my love, I was able to answer him honestly that I was doing well. Tonight my answer would be more along the lines of "I'm hanging in there..." but I suppose that's pretty normal. I'm tired and stressed, but hanging in there. Looking forward to my therapy session tomorrow.
Tuesday, January 22, 2013
Life is a whirlwind
Less than a month ago, my love and I spent some time discussing the fact that we wanted to have a wedding in this coming year. About a week later, we found out about the new tumor and my love was admitted to the hospital. About a week after that, my love was released from the hospital with hospice care, Sunday a nurse from hospice told us my love appeared to be declining and might have just a matter of days left, Monday things turned around and my love is no longer showing those signs of decline. I can't begin to express how grateful I am for Monday's turnaround. Such a blessing that has restored a bit of the faith I'd been struggling with.
It probably goes without saying that I have been on an emotion roller coaster lately. In the last week alone, I have felt so much. There were times I have found great joy and laughed so hard it made my stomach sore. There have been times of great sorrow and pain and fear where I cried so long and so hard that my head throbbed, my eyes burned, and my stomach was sore from bawling. There have been times of great depression and irrationality, and times of peace and comfort and clarity of mind. And these times only scratch the surface of what I have felt this last week alone.
Despite the whirlwind of the last week (and really the last month or even year), today I feel grateful. One thing that I have always admired about my love is my love's ability to find the positive, often even in very difficult situations; I am trying to do the same. I say that I am trying because I am far from mastering this, but you've caught me at a good moment on a good day. Today I am grateful that my love's nausea is finally under control. I am thankful that I have been able to have some important conversations with several important people in my life including my love as well as family members and friends. I am thankful that my moments of irrational thinking, depression, and anguish have been outweighed by love, support, and clarity and that I have been able to discuss those darker moments with people in my support system and actively plan for what needs to happen if I am overcome by such moments. I am so grateful for each moment I have with my love and for all that we have shared throughout our relationship both as friends and as partners. I am feeling grateful for all of this and much more.
I want to share something with all of you, that I hope if I ever lose sight of, that those of you who love and support me can lovingly remind me of and guide me back to. Quite some time ago, I honestly can't even remember when, my love and I were talking about death. This may seem a strange topic, but we have both dealt with a lot over the years, especially with depression, and so we discussed how difficult it would be for either of us if we were to lose the other. I felt very strongly at that time that if my love were to die, that I would want to die as well, that it would be too difficult to be without my love and I would likely commit suicide. What my love said next wasso amazing and wise and enlightened, as things my love has really thought about often are. My love looked at me and said that if my love was ever to lose me to death, that it would be extremelydifficult, but that my love would want to live to try and do the things I would never have the chance to do. That has always stuck with me over the years and I have thought about it a lot lately, and on Sunday, I reminded my love of that conversation and said that my love's wise desire was my new goal. That whenever my love's time on this Earth is finished, that I will hold my love's memory and spirit close and I will do my best to do the things my love won't get to do. I don't know exactly what that will look like, but it is my goal.
Well, it is rather late, so I am going ti close. Thank you all for being part of our support system. Best wishes!
(p.s. - please excuse any grammatical errors as I am writing this on my pgone which has a touchytoch screen keyboard that doesn't always do what I want it ti.)
It probably goes without saying that I have been on an emotion roller coaster lately. In the last week alone, I have felt so much. There were times I have found great joy and laughed so hard it made my stomach sore. There have been times of great sorrow and pain and fear where I cried so long and so hard that my head throbbed, my eyes burned, and my stomach was sore from bawling. There have been times of great depression and irrationality, and times of peace and comfort and clarity of mind. And these times only scratch the surface of what I have felt this last week alone.
Despite the whirlwind of the last week (and really the last month or even year), today I feel grateful. One thing that I have always admired about my love is my love's ability to find the positive, often even in very difficult situations; I am trying to do the same. I say that I am trying because I am far from mastering this, but you've caught me at a good moment on a good day. Today I am grateful that my love's nausea is finally under control. I am thankful that I have been able to have some important conversations with several important people in my life including my love as well as family members and friends. I am thankful that my moments of irrational thinking, depression, and anguish have been outweighed by love, support, and clarity and that I have been able to discuss those darker moments with people in my support system and actively plan for what needs to happen if I am overcome by such moments. I am so grateful for each moment I have with my love and for all that we have shared throughout our relationship both as friends and as partners. I am feeling grateful for all of this and much more.
I want to share something with all of you, that I hope if I ever lose sight of, that those of you who love and support me can lovingly remind me of and guide me back to. Quite some time ago, I honestly can't even remember when, my love and I were talking about death. This may seem a strange topic, but we have both dealt with a lot over the years, especially with depression, and so we discussed how difficult it would be for either of us if we were to lose the other. I felt very strongly at that time that if my love were to die, that I would want to die as well, that it would be too difficult to be without my love and I would likely commit suicide. What my love said next wasso amazing and wise and enlightened, as things my love has really thought about often are. My love looked at me and said that if my love was ever to lose me to death, that it would be extremelydifficult, but that my love would want to live to try and do the things I would never have the chance to do. That has always stuck with me over the years and I have thought about it a lot lately, and on Sunday, I reminded my love of that conversation and said that my love's wise desire was my new goal. That whenever my love's time on this Earth is finished, that I will hold my love's memory and spirit close and I will do my best to do the things my love won't get to do. I don't know exactly what that will look like, but it is my goal.
Well, it is rather late, so I am going ti close. Thank you all for being part of our support system. Best wishes!
(p.s. - please excuse any grammatical errors as I am writing this on my pgone which has a touchytoch screen keyboard that doesn't always do what I want it ti.)
Friday, January 18, 2013
Sometimes You Surprise Yourself
There have been many times in my life when I have said things like, "I'd never.." and then had to eat my words. I have surprised myself a lot over the years with how my life has gone. Today, I'm surprising myself once again.
I don't know that I have actually ever said, "I'd never have a day where my only goal was to get a hold of some marijuana" in fact, quite frankly I think I thought that was so far out of the realm of possibility, that I never even thought to make such a statement. Well, as life so has it, that is indeed my only goal for today.
No, I have not become suddenly rebellious or whatever, and no, the marijuana would not be for me, it would be for my love to try and combat my love's untouchable severe nausea. My love is miserable. In fact, those were exactly the words my love used the other day to describe how my love felt, miserable. It is heartbreaking to watch someone I love and care about so deeply suffer so. We have exhausted every other feasible option as far as I know. The doctors are rather stumped. Granted, the medical marijuana might not even help at this point, we don't know, but we have to try. We are hoping that my love might be able to tolerate having it made into a tea or some form of an edible something or other. Of course, though, I can't just stroll down to Walgreens and pick some up like I can with everything else we've tried. So I (you know, the one who grew up the straight-laced good little Mormon girl) have been making phone calls like a mad woman trying to get more information on how to obtain this alternative treatment. If someone ran my phone log today, they probably would think that I am actually a desperate drug-addict, instead of a loving partner, but I don't really care what it looks like, I just want to help my love feel better.
So yeah, I have called clinics that specialize in helping people get med cards, I've called dispensaries, I've called people who know people who use marijuana for medical purposes, and so far, no luck, but I am not giving up. I keep running into a ten to twenty-one day waiting period for the med card to be active or whatever so that we could legally purchase the marijuana. This is terribly frustrating to me, for a number of reasons. First, my love's doctors are totally on board, they just want my love to feel better. One of the doctors even said that if there was a way for her to write my love a temporary prescription kind of thing, that she would be happy to do so. They know my love has brain cancer, they know that my love isn't making it up, or trying to screw with the system or what not, my love just wants relief from the ever present severe nausea that this stupid new tumor is causing. Second, I feel like this waiting period is almost a punishment for being a "good, law-abiding citizen" that only turns to illicit substances as a last resort. Can't they come up with a "fast-track" system if a doctor signs off that their patient has exhausted other avenues. My love is way too miserable to wait ten to twenty-one days for relief. I'd like the idiotic government officials that created this stupid waiting period to feel the way my love feels for ten to twenty-one days and then come back and tell me how a waiting period makes sense in all circumstances. I get that people will try to take advantage of any system, but if someone is diagnosed with a serious illness like cancer and are terribly uncomfortable, they should not have to twiddle their thumbs for up to three weeks before getting relief.
So yeah, I am still searching and trying to get a hold of this stuff. Hopefully once we have it, it will work. If not, at least no one will be able to say we didn't try absolutely everything. Ugh!
Moral of the story, never say (or even think) "I'd never...." It will come back and bite you in the butt!
I don't know that I have actually ever said, "I'd never have a day where my only goal was to get a hold of some marijuana" in fact, quite frankly I think I thought that was so far out of the realm of possibility, that I never even thought to make such a statement. Well, as life so has it, that is indeed my only goal for today.
No, I have not become suddenly rebellious or whatever, and no, the marijuana would not be for me, it would be for my love to try and combat my love's untouchable severe nausea. My love is miserable. In fact, those were exactly the words my love used the other day to describe how my love felt, miserable. It is heartbreaking to watch someone I love and care about so deeply suffer so. We have exhausted every other feasible option as far as I know. The doctors are rather stumped. Granted, the medical marijuana might not even help at this point, we don't know, but we have to try. We are hoping that my love might be able to tolerate having it made into a tea or some form of an edible something or other. Of course, though, I can't just stroll down to Walgreens and pick some up like I can with everything else we've tried. So I (you know, the one who grew up the straight-laced good little Mormon girl) have been making phone calls like a mad woman trying to get more information on how to obtain this alternative treatment. If someone ran my phone log today, they probably would think that I am actually a desperate drug-addict, instead of a loving partner, but I don't really care what it looks like, I just want to help my love feel better.
So yeah, I have called clinics that specialize in helping people get med cards, I've called dispensaries, I've called people who know people who use marijuana for medical purposes, and so far, no luck, but I am not giving up. I keep running into a ten to twenty-one day waiting period for the med card to be active or whatever so that we could legally purchase the marijuana. This is terribly frustrating to me, for a number of reasons. First, my love's doctors are totally on board, they just want my love to feel better. One of the doctors even said that if there was a way for her to write my love a temporary prescription kind of thing, that she would be happy to do so. They know my love has brain cancer, they know that my love isn't making it up, or trying to screw with the system or what not, my love just wants relief from the ever present severe nausea that this stupid new tumor is causing. Second, I feel like this waiting period is almost a punishment for being a "good, law-abiding citizen" that only turns to illicit substances as a last resort. Can't they come up with a "fast-track" system if a doctor signs off that their patient has exhausted other avenues. My love is way too miserable to wait ten to twenty-one days for relief. I'd like the idiotic government officials that created this stupid waiting period to feel the way my love feels for ten to twenty-one days and then come back and tell me how a waiting period makes sense in all circumstances. I get that people will try to take advantage of any system, but if someone is diagnosed with a serious illness like cancer and are terribly uncomfortable, they should not have to twiddle their thumbs for up to three weeks before getting relief.
So yeah, I am still searching and trying to get a hold of this stuff. Hopefully once we have it, it will work. If not, at least no one will be able to say we didn't try absolutely everything. Ugh!
Moral of the story, never say (or even think) "I'd never...." It will come back and bite you in the butt!
Sunday, January 6, 2013
Update from the Hospital
So, the other day I started writing a post that was going to focus on being thankful to say goodbye to last year and hoping that this year would bring tremendous improvement for my love, but I didn't have time to finish it. Sadly, that is not what this post is about today exactly (hopefully I will get back to the other post another time). Instead this post is an update from my love's room at the hospital.
I feel a bit overwhelmed with everything that has happened in the last week or so, so I will probably forget things and leave stuff out, so if you have any questions, don't hesitate to contact me, either here in the comments, by email, or by phone.
So, I am going to start with the most important info, that way if you don't have time to read a ridiculously long post, you can at least be updated. This past Thursday (Jan. 3) my love had another MRI. We were at the two month point and the oncologist felt it was important to do it sooner rather than later, which we all agreed about. The following afternoon we had an appointment with the oncologist and we were informed that the MRI showed new tumor growth, this time right around the brain stem. The oncologist was rather concerned and felt my love should be admitted to the hospital. He told us that the tumor was most likely inoperable, but that, because of it's new location, could most likely be treated with radiation, Avastin, and a different chemotherapy drug (as it grew while my love was on the other chemo drug, so that one obviously wasn't doing the job). He said they would bump up my love's steroids as the area of the new tumor is quite sensitive and was causing swelling that needed to be brought down. He said most likely nothing treatment wise would start until Monday as the radiology people didn't work on the weekends, but that it would be a good idea for my love to be in the hospital anyway to get things moving as quickly as possible and to be monitored, especially with the swelling.
This all happened very quickly, so quickly that I felt my love was hardly getting a word in edgewise and I felt that decisions were being made without actually asking my love. So, for better or worse, I went on defense mode. I guess I have just felt that in various situations throughout this process that my love has been treated more as a child than an adult, which I am not okay with, so I have been trying to open my mouth more and make sure that my love's voice is heard, probably more of a personal issue than anything else, but yeah, I feel it's important that my love has a say in every step along the way, whether a doctor thinks something is best or not. I have also been rather frustrated with the oncologist lately, so I have been on the defensive with him anyway, so yeah, for better or worse, I asked a lot of questions.
So, my love, as well as my love's family, and I (but most important my love) felt that being admitted to the hospital was a good idea and that we want to get things moving as quickly as possible to treat this. So we were taken from the cancer pavilion through a tunnel across the street to the hospital. Now, I must say that as much as I am pissed with the oncologist, I really appreciate a lot of the staff in his office, especially the people in scheduling. One woman in particular really likes my love and is always really kind and helpful. Luckily she was the one that called over and set up my love's room and stuff, so, thanks to her, though we had to be admitted to a double room for a short time, she made sure my love was put at the top of the list for the single room that was to open up a little later that evening when another patient was discharged. This was really helpful as when my love is in the hospital neither my love's mom nor I have a tendency to leave the hospital for much of anything. My love's mom is rather adamant about not leaving whatsoever, and I only leave if it is absolutely necessary for taking care of myself or my love, so we sleep in chairs in my love's room every night and that is difficult in a double room. Also, my love's "room buddy" in the first room had the television on rather noisily, and my love has had a fair amount of headaches, dizziness, and nausea which often gets worse with increased commotion, so a single room where my love could rest in peace and quiet is definitely ideal.
So, that first night they really upped my love's Decadron (the steroid), which we expressed concern with and I kind of questioned/fought, but the RN from my love's oncology office that was at the hospital was adamant about giving my love a "loading dose" of 10 mg. and then proceeding with 4 mg. every four hours. She said that the swelling my love was having was "potentially life-threatening," and then I shut up pretty quick. Whether that was true or not and she just wanted me off her back, I may never know. I certainly want the best for my love, whether the RN sees that or not, and my concern was with how difficult it is for my love to handle that much steroid, and the RN said it would probably just be that high for a day or two, so my concern was the extreme joint pain my love has every time the dose is lowered.
Anyway, we've been at the hospital now for almost two full days. They seem to be taking pretty good care of my love, the nurses and aides are particularly great. I am tired and don't feel like typing any more at the moment, but at least now there is an update, even if it is kind of a partial one.
Keep us in your thoughts/prayers/whatever if you can. Thanks!
I feel a bit overwhelmed with everything that has happened in the last week or so, so I will probably forget things and leave stuff out, so if you have any questions, don't hesitate to contact me, either here in the comments, by email, or by phone.
So, I am going to start with the most important info, that way if you don't have time to read a ridiculously long post, you can at least be updated. This past Thursday (Jan. 3) my love had another MRI. We were at the two month point and the oncologist felt it was important to do it sooner rather than later, which we all agreed about. The following afternoon we had an appointment with the oncologist and we were informed that the MRI showed new tumor growth, this time right around the brain stem. The oncologist was rather concerned and felt my love should be admitted to the hospital. He told us that the tumor was most likely inoperable, but that, because of it's new location, could most likely be treated with radiation, Avastin, and a different chemotherapy drug (as it grew while my love was on the other chemo drug, so that one obviously wasn't doing the job). He said they would bump up my love's steroids as the area of the new tumor is quite sensitive and was causing swelling that needed to be brought down. He said most likely nothing treatment wise would start until Monday as the radiology people didn't work on the weekends, but that it would be a good idea for my love to be in the hospital anyway to get things moving as quickly as possible and to be monitored, especially with the swelling.
This all happened very quickly, so quickly that I felt my love was hardly getting a word in edgewise and I felt that decisions were being made without actually asking my love. So, for better or worse, I went on defense mode. I guess I have just felt that in various situations throughout this process that my love has been treated more as a child than an adult, which I am not okay with, so I have been trying to open my mouth more and make sure that my love's voice is heard, probably more of a personal issue than anything else, but yeah, I feel it's important that my love has a say in every step along the way, whether a doctor thinks something is best or not. I have also been rather frustrated with the oncologist lately, so I have been on the defensive with him anyway, so yeah, for better or worse, I asked a lot of questions.
So, my love, as well as my love's family, and I (but most important my love) felt that being admitted to the hospital was a good idea and that we want to get things moving as quickly as possible to treat this. So we were taken from the cancer pavilion through a tunnel across the street to the hospital. Now, I must say that as much as I am pissed with the oncologist, I really appreciate a lot of the staff in his office, especially the people in scheduling. One woman in particular really likes my love and is always really kind and helpful. Luckily she was the one that called over and set up my love's room and stuff, so, thanks to her, though we had to be admitted to a double room for a short time, she made sure my love was put at the top of the list for the single room that was to open up a little later that evening when another patient was discharged. This was really helpful as when my love is in the hospital neither my love's mom nor I have a tendency to leave the hospital for much of anything. My love's mom is rather adamant about not leaving whatsoever, and I only leave if it is absolutely necessary for taking care of myself or my love, so we sleep in chairs in my love's room every night and that is difficult in a double room. Also, my love's "room buddy" in the first room had the television on rather noisily, and my love has had a fair amount of headaches, dizziness, and nausea which often gets worse with increased commotion, so a single room where my love could rest in peace and quiet is definitely ideal.
So, that first night they really upped my love's Decadron (the steroid), which we expressed concern with and I kind of questioned/fought, but the RN from my love's oncology office that was at the hospital was adamant about giving my love a "loading dose" of 10 mg. and then proceeding with 4 mg. every four hours. She said that the swelling my love was having was "potentially life-threatening," and then I shut up pretty quick. Whether that was true or not and she just wanted me off her back, I may never know. I certainly want the best for my love, whether the RN sees that or not, and my concern was with how difficult it is for my love to handle that much steroid, and the RN said it would probably just be that high for a day or two, so my concern was the extreme joint pain my love has every time the dose is lowered.
Anyway, we've been at the hospital now for almost two full days. They seem to be taking pretty good care of my love, the nurses and aides are particularly great. I am tired and don't feel like typing any more at the moment, but at least now there is an update, even if it is kind of a partial one.
Keep us in your thoughts/prayers/whatever if you can. Thanks!
Wednesday, December 26, 2012
Post Christmas Update
Hello all! I hope those of you who celebrate Christmas had a merry one, and those of you who don't, I hope you had a lovely December 25th.
I thought I would take some time to update you all on the past few days so as not to worry anyone any more than I already have.
The morning of Christmas Eve was similar to the day before, my love had a little confusion, though it was substantially less than Saturday afternoon and evening, and was still having a lot of trouble moving. My love's legs simply didn't seem to want to work. So we called the oncologist's office to see if they were open and see if there was anything they could suggest. They were open and my love's oncologist was even there when we called. We left a message stating what had been going on and asked what could be done. Over an hour later we got a call back from his nurse saying that she had spoken with him and he said there was nothing more he could do until after he saw the results of the MRI scheduled for Thursday. We told the nurse that we didn't have an MRI scheduled for Thursday, my love had a spinal tap scheduled for that morning, but the spinal MRI had already happened and the oncologist already had those reports. The nurse then said he must have been talking about the spinal tap and there was still nothing he could do until after that time, so he would see my love on Friday and go over the results of that test.
Needless to say, we were quite frustrated with that answer. It's easy for him to say there's nothing he can do until Friday, he isn't the one here watching my love struggle to move and having to support my love when my love's legs won't. We tried calling other members of my love's treatment team to see if anyone else had a better answer than see you Friday, but we weren't able to get a hold of anyone with the holiday. So we decided to call back and ask for the oncologist to speak to us directly rather than through the nurse. We waited a while, then got a call back from the nurse once again stating that the oncologist had already left for the day, but she had spoken with his physician's assistant and she had said that she didn't have time to see my love that day, so her suggestions were that if we felt it was an emergency situation we should go to the ER, otherwise, she would suggest upping the decadron (the steroid we'd be fighting so hard against because of negative side effects). We discussed these options and didn't feel like it was a life threatening emergency or anything and that if we went to the hospital, they'd likely try upping the decadron anyway, so we asked how much to increase the dosage. We were told to up it from 1 mg twice a day to 2 mg twice a day, which my love had been on a month or so ago.
So, that's what we did. We asked how soon we would notice a difference if the decadron was to help and the nurse said she thought we'd see a difference the next day most likely, but we weren't honestly sure how familiar she was with the drug. So my love struggled throughout the day on the 24th, sleeping a lot, not feeling well, and not moving well. My love really wanted to go to the Christmas Eve service at my love's church, but didn't feel well enough and didn't think it would be a good idea to push it. It was really sad and hard for my love to miss the service, but my love's mom and I tried to make up for it as best we could by staying home with my love and singing Christmas hymns and reading Christmas stories. We even baked some Christmas cookies as after the service they have cookies available.
Then came Christmas day. The morning started out fairly similarly, with my love being very tired, not feeling very good and such. But by late morning my love got up and sat in the wheelchair and played some cribbage with the family. My love had not been out of bed much the previous two days because my love didn't feel well enough, when sitting up the world spun and my love felt nauseous, so for my love to get up and play cribbage was fantastic. Sadly, that wore my love out a bit, so my love was a bit too tired to eat Christmas lunch with us when it was ready. But within an hour after we finished, my love was feeling better and got up and sat in the wheelchair and had a good sized Christmas lunch at the table! I cannot tell you how exciting this was. It was a fantastic Christmas gift to all of us to see my love have a better day. And things continued to be much better than the previous days. My love ended up eating at the table two more times on Christmas day.
Today has been a pretty good day for my love as well. My love has eaten at the table a few times and even did some occupational therapy exercises today. My love is so determined and persistent and I am very proud of my love. Early tomorrow morning is my love's spinal tap, which we are all dreading because the test itself is rather terrible to go through so I understand. My love had one in middle school and describes it as one of the worst experiences my love has gone through. So yeah, it sucks that my love has to go through it again. Hopefully they have somehow improved the process since our middle school years.
With everything that has been happening and is going to happen, I have a lot of fear and uncertainty, but I continue to hope and pray for the best. I love my love very very much and want to support my love no matter what, I just want the "no matter what" part to be painless for my love.
I will try to keep you all updated on the spinal tap results as we find out info. Feel free to contact me if you get concerned or don't get info as quickly as you'd like. Hugs and love to you all! And thank you for your continuing love and support. It means the world to me, my love, and my love's family.
I thought I would take some time to update you all on the past few days so as not to worry anyone any more than I already have.
The morning of Christmas Eve was similar to the day before, my love had a little confusion, though it was substantially less than Saturday afternoon and evening, and was still having a lot of trouble moving. My love's legs simply didn't seem to want to work. So we called the oncologist's office to see if they were open and see if there was anything they could suggest. They were open and my love's oncologist was even there when we called. We left a message stating what had been going on and asked what could be done. Over an hour later we got a call back from his nurse saying that she had spoken with him and he said there was nothing more he could do until after he saw the results of the MRI scheduled for Thursday. We told the nurse that we didn't have an MRI scheduled for Thursday, my love had a spinal tap scheduled for that morning, but the spinal MRI had already happened and the oncologist already had those reports. The nurse then said he must have been talking about the spinal tap and there was still nothing he could do until after that time, so he would see my love on Friday and go over the results of that test.
Needless to say, we were quite frustrated with that answer. It's easy for him to say there's nothing he can do until Friday, he isn't the one here watching my love struggle to move and having to support my love when my love's legs won't. We tried calling other members of my love's treatment team to see if anyone else had a better answer than see you Friday, but we weren't able to get a hold of anyone with the holiday. So we decided to call back and ask for the oncologist to speak to us directly rather than through the nurse. We waited a while, then got a call back from the nurse once again stating that the oncologist had already left for the day, but she had spoken with his physician's assistant and she had said that she didn't have time to see my love that day, so her suggestions were that if we felt it was an emergency situation we should go to the ER, otherwise, she would suggest upping the decadron (the steroid we'd be fighting so hard against because of negative side effects). We discussed these options and didn't feel like it was a life threatening emergency or anything and that if we went to the hospital, they'd likely try upping the decadron anyway, so we asked how much to increase the dosage. We were told to up it from 1 mg twice a day to 2 mg twice a day, which my love had been on a month or so ago.
So, that's what we did. We asked how soon we would notice a difference if the decadron was to help and the nurse said she thought we'd see a difference the next day most likely, but we weren't honestly sure how familiar she was with the drug. So my love struggled throughout the day on the 24th, sleeping a lot, not feeling well, and not moving well. My love really wanted to go to the Christmas Eve service at my love's church, but didn't feel well enough and didn't think it would be a good idea to push it. It was really sad and hard for my love to miss the service, but my love's mom and I tried to make up for it as best we could by staying home with my love and singing Christmas hymns and reading Christmas stories. We even baked some Christmas cookies as after the service they have cookies available.
Then came Christmas day. The morning started out fairly similarly, with my love being very tired, not feeling very good and such. But by late morning my love got up and sat in the wheelchair and played some cribbage with the family. My love had not been out of bed much the previous two days because my love didn't feel well enough, when sitting up the world spun and my love felt nauseous, so for my love to get up and play cribbage was fantastic. Sadly, that wore my love out a bit, so my love was a bit too tired to eat Christmas lunch with us when it was ready. But within an hour after we finished, my love was feeling better and got up and sat in the wheelchair and had a good sized Christmas lunch at the table! I cannot tell you how exciting this was. It was a fantastic Christmas gift to all of us to see my love have a better day. And things continued to be much better than the previous days. My love ended up eating at the table two more times on Christmas day.
Today has been a pretty good day for my love as well. My love has eaten at the table a few times and even did some occupational therapy exercises today. My love is so determined and persistent and I am very proud of my love. Early tomorrow morning is my love's spinal tap, which we are all dreading because the test itself is rather terrible to go through so I understand. My love had one in middle school and describes it as one of the worst experiences my love has gone through. So yeah, it sucks that my love has to go through it again. Hopefully they have somehow improved the process since our middle school years.
With everything that has been happening and is going to happen, I have a lot of fear and uncertainty, but I continue to hope and pray for the best. I love my love very very much and want to support my love no matter what, I just want the "no matter what" part to be painless for my love.
I will try to keep you all updated on the spinal tap results as we find out info. Feel free to contact me if you get concerned or don't get info as quickly as you'd like. Hugs and love to you all! And thank you for your continuing love and support. It means the world to me, my love, and my love's family.
Sunday, December 23, 2012
Merry Christmas, Medication Issues - An Overdue Very Long Post
'Twas the week before Christmas and all through our house, stress, confusion, and issues abound.
That basically sums up what's been going on these last seven days (and possibly longer).
I'm very sorry that I have not been nearly as diligent in keeping everyone informed as I had planned on being. I will try to catch you all up at some point, but rather than try to cover several months worth of info right this moment, for my own sanity, I'm simply going to write about this last week in this post.
So, my love has been on a chemotherapy regimen of 5 days on 23 days off since ending radiation. This past Monday was the last day of the most recent round of chemo and started off a lot of the craziness. My love has been having some pretty serious dizziness and nausea for quite a while now, but this last round of chemo pushed it over the edge. On Monday the dizziness and nausea got so bad that my love threw up after readjusting from a seated to lying position. My love had been nauseous all morning so had eaten only a bit of toast and applesauce. Not good when things that bland don't even stay in your tummy. Between not feeling well (nausea and dizzy wise), especially when sitting or standing, and throwing up once daily from Monday to Wednesday, my love didn't get enough fluid or sustenance and we were worried that my love was becoming dehydrated.
By Wednesday, we were quite worried, so we called all of the doctors, and yes, I mean all. We called the oncologist, the palliative care doctor, and the case manager and expressed a variety of concerns including the dehydration and the dizziness and nausea being so bad. So, the oncologist's office squeezed us in to see the physician's assistant Thursday morning at 9:30. They did some blood work, talked to my love, my love's mom, and myself and determined that my love was indeed dehydrated and needed some IV fluids. The physicians assistant also told us to start a regular regimen of the nausea medication my love takes the days of chemo called zophran plus add another medication for nausea called marinol. So, we went to a little room in the infusions area and my love got to lay down and get some IV fluids as well as some ativan which they said was to help with both the nausea and to stimulate the appetite. They also wanted to give my love 10 mg of decadron (the steroid my love has been on since they found the tumor that we have been trying to wean off of as per the oncologist as it is causing an array of issues for my love), which is 5 times the amount my love currently takes in a day, and my love had already taken 1 mg that morning, so my love's mom and I fought against that and they did not give the decadron after all. So a little while after starting the IV fluids and giving my love the ativan, they got the blood work back and said that my love's potassium was low, so they wanted to do a potassium infusion which would take two hours as if you give someone a lot of potassium at once it can mess with the heart rhythm. So the appointment went from what we were hoping would take half an hour to an hour to lasting from 9:15 am (as my love had to come in early for labs) until after 2:30 in the afternoon. Needless today, stuff I was hoping to get done for work did not get done. Oh well, not a huge deal.
So, after getting the IV fluids and ativan, my love started feeling exponentially better. I'm talking very little nausea or dizziness and my love was hungry! I was very excited. My love even ate almost an entire ham and provolone sandwich from the cafe (that was a good size), which was probably more than my love had eaten in the past three days combined. The sandwich even had honey mustard, spinach, and tomato on it and it sat well in my love's stomach. The nurse saw how well my love did with the ativan and suggested that my love might start taking some regularly with the zophran and marinol. That evening, my love was still feeling somewhat dizzy and nauseous at times, but was able to come to the table and eat dinner with us, which hadn't happened all week (my love had only been eating from a TV tray on the couch because coming to the table made my love too dizzy and nauseous). So, we all ate dinner and it stayed put. We had instructions to make sure my love sipped on powerade or something with electrolytes every half an hour, and we hoped we were out of the woods.
Sadly, the next morning when getting up to go to the bathroom, my love threw up yet again (though there was practically nothing left in my love's belly to throw up as my love hadn't eaten since the night before). The dizziness and nausea continued throughout the day, though, thankfully, my love did not throw up again. We had instructions from the oncologist's PA to call the next day to check in. So later in the afternoon my love and my love's mom called and let them know what was going on. The physician's assistant called back a little while later and said that she felt my love should go back in to get more IV fluids, but that the cancer pavilion was closed by this point, so they should go the hospital's emergency room. So I get a text at 5:53 from my love's mom saying that after talking with the oncology office they wanted my love to get another IV for fluids, this time at the hospital. I am really tired of getting phone calls and texts that my love is in the emergency room, granted it has only happened twice lately, but it is still no fun! Anyway, so instead of driving home or to my love's church to attend the Winter Solstice concert that my love had been looking forward to for quite some time, I drove to the hospital.
My love was getting fluids and was feeling very tired, so my love's mom informed me that more blood work had been done to make sure things were looking good, as well as a urine analysis and that zophran had been given again. After a little while, my love needed to use the restroom and when my love sat up, my love said that on a scale from 1 to 10 both dizziness and nausea were non-existent. Boy was that exciting! So, the ER's physician's assistant that was taking care of my love came back after a while and said that my love was not dehydrated and that all the levels of stuff shown in the blood work looked really good, so that my love could go home if that was what we wished, or if we wanted, they could admit my love and try and figure out if there was something more going on since it had been 4 or 5 days of pretty severe nausea and dizziness. They said that if my love stayed, they would probably do another MRI, just to make sure nothing new was going on. My love just had an MRI in November and things looked very stable at that point, so my love was feeling pretty good and wanted to go home. When my love got up to go to the bathroom after being discharged, however, my love started feeling dizzy and nauseous again. My love was still pretty adamant about going home though, so that's what we did.
Now, before hearing back from the physician's assistant at the oncologist's office on Friday, we finally heard back from the palliative care doctor and he suggested that my love stop taking reglan (which my love was put on for nausea over Thanksgiving break) and change to Phenergan which is an older drug and helps some people more. So, if you are keeping track, three new medications were added in the course of two days in addition to one being changed from as needed to a regular regimen and one being dropped. We checked with the oncologist's office to see if they agreed with that suggestion and they said that would be fine to try.
So, that brings us to Saturday. On Saturday morning, my love was still feeling dizzy and nauseous. We made sure that my love got all of the new medications and breakfast by 10 am. By 1 pm, my love was feeling pretty good and wanted to go shopping for Christmas presents. I was supposed to have left to go to Iowa Saturday morning to visit my family for Christmas, but I wanted to make sure that my love wasn't going to end up back in the hospital or anything before heading out, so I stayed an extra day. So, my love and I went to the mall to look for Christmas presents. We first got some lunch around 2 at Panera and my love took all the medications that were supposed to be taken at lunch at that time (Marinol, Zophran, Meclizine, Decadron, and Phenergan). We then shopped around at various sports apparel stores looking for things for my love's siblings. Around 3:30 or 4 my love started seeming a little off. I asked if we should return home, and my love said that it was hard to go home after being out because at home my love felt everyone felt they could tell my love what to do. My love was pretty adamant about not going home. So I didn't think too much of it, we just kept shopping and at times my love seemed a bit agitated but that's not terribly weird considering my love was in a wheelchair for quite a while and seemed a bit uncomfortable. At about 4:15 or 4:30 my love took the Ativan as prescribed. A little bit later my love started getting more and more confused and disoriented, but was still rather adamant about not wanting to go home. There were just little things my love was confused about, thinking that a red tag was the handicap parking pass on the floor, thinking the bag had fallen on the floor when it was sitting in a chair, just little stuff at first. We ate some sweets and hot chocolate at the Barnes and Noble cafe and then my love started realizing how confused my love was. After a little while my love agreed that it was time to go home. On the drive home my love was very confused and disoriented saying things like, "So you're okay with soft foods for dinner tonight, because you know when you get a filling or dental work they say not to eat for a half an hour and then once you start eating, to eat soft foods." In case you were wondering, I've not been to a dentist in over a year and my love hasn't been to one in over a month at least.
When we got home, my love continued to be disoriented and confused. My love did not want to get out of the car because my love thought we were leaving instead of coming home, and all sorts of things like that continued once my love was inside. So, obviously my love's parents and I were concerned. So we called the after hours line for the oncology office. We explained what was going on and they said the on call oncologist would call us back within a half an hour or we were to call back. A half an hour came and went with no phone call, so we called back. They then said that if we didn't hear back within 45 minutes to call back as they were trying to reach the doctor in other ways. So, within a half an hour, we got a phone call from the on call oncologist whom had been contacted the night before when my love was in the emergency room to see if he felt strongly one way or the other on my love being released. So, we told him what was going on and the three new medications my love had started in the past couple of days. He said that we should stop the Marinol as that frequently has a lot of negative side effects which can include confusion. We told him that we had read in the medication information for the Phenergan that it could also cause confusion (in the time that we were waiting for him to call back, we looked at the paperwork that came with the Phenergan and Ativan, I don't think we could find the Marinol's paperwork). He said that was not a common side effect of that medication, but that we could stop it and go back to the Reglan. So, that's what we did. We asked about what time frame we should be concerned if her condition did not improve, but he didn't really give a straight answer even though the question was asked at least three times. He did, however, recommend upping the decadron for a short time period, which we again fought against saying that the oncologist we work with has been trying to get my love off of the medication for quite some time, slowly tapering it down and that my love has had a lot of negative side effects from this medication.
So we stopped the two medications the oncologist suggested. After going to bed, I couldn't sleep, so I looked up the three new medications prescribed to my love and their side effects. What I learned blew my mind and kind of terrified me. The marinol, as I understand it from the reading I did, is basically a man-made cannabis and frequently has many negative side effects (as the on call oncologist said) that can include everything from confusion, hallucinations and feeling "high" to dizziness. What I read also said that you should avoid taking it if you are on other medication that affects the central nervous system, like antidepressants (which my love is on) as they can enhance the effects of marinol. We were told practically nothing about the medication when it was prescribed, just that it would hopefully help with the nausea. No information on side effects to look for or anything else was mentioned. I am extremely ticked off about this. Phenergan also listed confusion as a possible side effect, as did the Ativan. I also found out that the Ativan is actually a benzodiazapine (which can be addictive) and is most commonly used for anxiety. We were again given none of this information; all we were told was that it would help the nausea and stimulate my love's appetite. I am livid. I feel like shaking some medical "professionals" until their eyeballs fall out of their heads. When I am prescribed new medications, I always ask about side effects and try to get as much information as possible, but all the meds I am prescribed are for mental health issues and I've had a lot of negative side effects before from such medications. When I go to a doctor that isn't for mental health and they prescribe me something for nausea or a cold or an infection, I don't normally ask about side effects, I guess I just assume that the medication they are giving me is a) for the condition I am saying is ailing me, b) for what the doctor says it is for, and c) if there is any important information I should know regarding side effects and such, that the doctor will take the time to tell me about them. Apparently in the world of oncology, anything can be used for nausea and patients don't need to know anything about potential side effects or issues. Can you tell I'm angry?
Which brings us to today, Sunday, December 23. My love has still had some confusion throughout the day. Everything from thinking that my love was able to get up and walk across a room to the bathroom without help (which has not been possible for at least a month), to thinking my love had put pizza in the microwave (again thinking my love had gotten up and walked to the microwave alone), to having very little grasp on the passage of time, to thinking things were in my love's hand or lap that weren't there. Many times my love realized after a minute or two that my love was confused and things weren't there or were different than my love thought, while other times my love was adamant that my love was correct and got very frustrated and agitated. It's been a rough week in general, but these last 30 hours have been particularly hard. It reminds me of when I was a caregiver and worked with clients with dementia, and that is terrifying when it is your 23 year old partner whom you love and care about. It has also reminded me several times of when my love was in the hospital for the first surgery. At that time my love was on morphine and got really confused. It is really hard to watch as well as frustrating at times because what do you say when the person you love gets angry and raises their voice at you because you try to tell them that you put the pizza in the fridge, but they think that they just put it in the microwave. It probably sounds stupid and trivial, but it's hard to help someone who is yelling at you because they are sure they're right when really they have no clue what's going on.
This morning after breakfast when my love was still having a lot of confusion, my love's parents and I were concerned because we didn't know how long the medication would be in my love's system and when we should be worried if the confusion hadn't ended. The pharmacy my love's family uses is closed until after the holidays, but I realized that the Walgreens by us is a 24 hour pharmacy, so I drove there and asked the pharmacist about the medications. I told him that my love was having confusion and he told me that, yes, all three of the medications can cause that and that by starting all three, the possibility of having confusion increased. I told him that my love had stopped two of the three, as per the on call oncologist, and asked how long those medications stay in one's system. He said that they can be in your system for a day or two, so if after two days my love was still having confusion to talk to the oncologist about stopping the third new medication. He also said that if it was one of the medications we stopped, that we would be seeing less confusion as it lessened in my love's system, which we have been. He didn't seem extremely concerned, especially when I told him that my love's confusion was less today after stopping the medication last night, which was encouraging to me and my love's parents. So yeah, hopefully we will see marked improvement in the morning. My love has also been very tired today and has slept a lot of the day, who knows if that's a side effect thing (I know the ativan can make you sleepy they said, which makes sense if it's an anti-anxiety med) or an overexertion thing or a combination of the two.
I am hoping and praying things are better tomorrow. If not, we'll probably call the doctor again. Blah, I think it is about time for things to get better instead of more challenging.
Again, I'll try to catch everyone up more later. If you have any questions, feel free to call me too.
Hugs and love to everyone!
That basically sums up what's been going on these last seven days (and possibly longer).
I'm very sorry that I have not been nearly as diligent in keeping everyone informed as I had planned on being. I will try to catch you all up at some point, but rather than try to cover several months worth of info right this moment, for my own sanity, I'm simply going to write about this last week in this post.
So, my love has been on a chemotherapy regimen of 5 days on 23 days off since ending radiation. This past Monday was the last day of the most recent round of chemo and started off a lot of the craziness. My love has been having some pretty serious dizziness and nausea for quite a while now, but this last round of chemo pushed it over the edge. On Monday the dizziness and nausea got so bad that my love threw up after readjusting from a seated to lying position. My love had been nauseous all morning so had eaten only a bit of toast and applesauce. Not good when things that bland don't even stay in your tummy. Between not feeling well (nausea and dizzy wise), especially when sitting or standing, and throwing up once daily from Monday to Wednesday, my love didn't get enough fluid or sustenance and we were worried that my love was becoming dehydrated.
By Wednesday, we were quite worried, so we called all of the doctors, and yes, I mean all. We called the oncologist, the palliative care doctor, and the case manager and expressed a variety of concerns including the dehydration and the dizziness and nausea being so bad. So, the oncologist's office squeezed us in to see the physician's assistant Thursday morning at 9:30. They did some blood work, talked to my love, my love's mom, and myself and determined that my love was indeed dehydrated and needed some IV fluids. The physicians assistant also told us to start a regular regimen of the nausea medication my love takes the days of chemo called zophran plus add another medication for nausea called marinol. So, we went to a little room in the infusions area and my love got to lay down and get some IV fluids as well as some ativan which they said was to help with both the nausea and to stimulate the appetite. They also wanted to give my love 10 mg of decadron (the steroid my love has been on since they found the tumor that we have been trying to wean off of as per the oncologist as it is causing an array of issues for my love), which is 5 times the amount my love currently takes in a day, and my love had already taken 1 mg that morning, so my love's mom and I fought against that and they did not give the decadron after all. So a little while after starting the IV fluids and giving my love the ativan, they got the blood work back and said that my love's potassium was low, so they wanted to do a potassium infusion which would take two hours as if you give someone a lot of potassium at once it can mess with the heart rhythm. So the appointment went from what we were hoping would take half an hour to an hour to lasting from 9:15 am (as my love had to come in early for labs) until after 2:30 in the afternoon. Needless today, stuff I was hoping to get done for work did not get done. Oh well, not a huge deal.
So, after getting the IV fluids and ativan, my love started feeling exponentially better. I'm talking very little nausea or dizziness and my love was hungry! I was very excited. My love even ate almost an entire ham and provolone sandwich from the cafe (that was a good size), which was probably more than my love had eaten in the past three days combined. The sandwich even had honey mustard, spinach, and tomato on it and it sat well in my love's stomach. The nurse saw how well my love did with the ativan and suggested that my love might start taking some regularly with the zophran and marinol. That evening, my love was still feeling somewhat dizzy and nauseous at times, but was able to come to the table and eat dinner with us, which hadn't happened all week (my love had only been eating from a TV tray on the couch because coming to the table made my love too dizzy and nauseous). So, we all ate dinner and it stayed put. We had instructions to make sure my love sipped on powerade or something with electrolytes every half an hour, and we hoped we were out of the woods.
Sadly, the next morning when getting up to go to the bathroom, my love threw up yet again (though there was practically nothing left in my love's belly to throw up as my love hadn't eaten since the night before). The dizziness and nausea continued throughout the day, though, thankfully, my love did not throw up again. We had instructions from the oncologist's PA to call the next day to check in. So later in the afternoon my love and my love's mom called and let them know what was going on. The physician's assistant called back a little while later and said that she felt my love should go back in to get more IV fluids, but that the cancer pavilion was closed by this point, so they should go the hospital's emergency room. So I get a text at 5:53 from my love's mom saying that after talking with the oncology office they wanted my love to get another IV for fluids, this time at the hospital. I am really tired of getting phone calls and texts that my love is in the emergency room, granted it has only happened twice lately, but it is still no fun! Anyway, so instead of driving home or to my love's church to attend the Winter Solstice concert that my love had been looking forward to for quite some time, I drove to the hospital.
My love was getting fluids and was feeling very tired, so my love's mom informed me that more blood work had been done to make sure things were looking good, as well as a urine analysis and that zophran had been given again. After a little while, my love needed to use the restroom and when my love sat up, my love said that on a scale from 1 to 10 both dizziness and nausea were non-existent. Boy was that exciting! So, the ER's physician's assistant that was taking care of my love came back after a while and said that my love was not dehydrated and that all the levels of stuff shown in the blood work looked really good, so that my love could go home if that was what we wished, or if we wanted, they could admit my love and try and figure out if there was something more going on since it had been 4 or 5 days of pretty severe nausea and dizziness. They said that if my love stayed, they would probably do another MRI, just to make sure nothing new was going on. My love just had an MRI in November and things looked very stable at that point, so my love was feeling pretty good and wanted to go home. When my love got up to go to the bathroom after being discharged, however, my love started feeling dizzy and nauseous again. My love was still pretty adamant about going home though, so that's what we did.
Now, before hearing back from the physician's assistant at the oncologist's office on Friday, we finally heard back from the palliative care doctor and he suggested that my love stop taking reglan (which my love was put on for nausea over Thanksgiving break) and change to Phenergan which is an older drug and helps some people more. So, if you are keeping track, three new medications were added in the course of two days in addition to one being changed from as needed to a regular regimen and one being dropped. We checked with the oncologist's office to see if they agreed with that suggestion and they said that would be fine to try.
So, that brings us to Saturday. On Saturday morning, my love was still feeling dizzy and nauseous. We made sure that my love got all of the new medications and breakfast by 10 am. By 1 pm, my love was feeling pretty good and wanted to go shopping for Christmas presents. I was supposed to have left to go to Iowa Saturday morning to visit my family for Christmas, but I wanted to make sure that my love wasn't going to end up back in the hospital or anything before heading out, so I stayed an extra day. So, my love and I went to the mall to look for Christmas presents. We first got some lunch around 2 at Panera and my love took all the medications that were supposed to be taken at lunch at that time (Marinol, Zophran, Meclizine, Decadron, and Phenergan). We then shopped around at various sports apparel stores looking for things for my love's siblings. Around 3:30 or 4 my love started seeming a little off. I asked if we should return home, and my love said that it was hard to go home after being out because at home my love felt everyone felt they could tell my love what to do. My love was pretty adamant about not going home. So I didn't think too much of it, we just kept shopping and at times my love seemed a bit agitated but that's not terribly weird considering my love was in a wheelchair for quite a while and seemed a bit uncomfortable. At about 4:15 or 4:30 my love took the Ativan as prescribed. A little bit later my love started getting more and more confused and disoriented, but was still rather adamant about not wanting to go home. There were just little things my love was confused about, thinking that a red tag was the handicap parking pass on the floor, thinking the bag had fallen on the floor when it was sitting in a chair, just little stuff at first. We ate some sweets and hot chocolate at the Barnes and Noble cafe and then my love started realizing how confused my love was. After a little while my love agreed that it was time to go home. On the drive home my love was very confused and disoriented saying things like, "So you're okay with soft foods for dinner tonight, because you know when you get a filling or dental work they say not to eat for a half an hour and then once you start eating, to eat soft foods." In case you were wondering, I've not been to a dentist in over a year and my love hasn't been to one in over a month at least.
When we got home, my love continued to be disoriented and confused. My love did not want to get out of the car because my love thought we were leaving instead of coming home, and all sorts of things like that continued once my love was inside. So, obviously my love's parents and I were concerned. So we called the after hours line for the oncology office. We explained what was going on and they said the on call oncologist would call us back within a half an hour or we were to call back. A half an hour came and went with no phone call, so we called back. They then said that if we didn't hear back within 45 minutes to call back as they were trying to reach the doctor in other ways. So, within a half an hour, we got a phone call from the on call oncologist whom had been contacted the night before when my love was in the emergency room to see if he felt strongly one way or the other on my love being released. So, we told him what was going on and the three new medications my love had started in the past couple of days. He said that we should stop the Marinol as that frequently has a lot of negative side effects which can include confusion. We told him that we had read in the medication information for the Phenergan that it could also cause confusion (in the time that we were waiting for him to call back, we looked at the paperwork that came with the Phenergan and Ativan, I don't think we could find the Marinol's paperwork). He said that was not a common side effect of that medication, but that we could stop it and go back to the Reglan. So, that's what we did. We asked about what time frame we should be concerned if her condition did not improve, but he didn't really give a straight answer even though the question was asked at least three times. He did, however, recommend upping the decadron for a short time period, which we again fought against saying that the oncologist we work with has been trying to get my love off of the medication for quite some time, slowly tapering it down and that my love has had a lot of negative side effects from this medication.
So we stopped the two medications the oncologist suggested. After going to bed, I couldn't sleep, so I looked up the three new medications prescribed to my love and their side effects. What I learned blew my mind and kind of terrified me. The marinol, as I understand it from the reading I did, is basically a man-made cannabis and frequently has many negative side effects (as the on call oncologist said) that can include everything from confusion, hallucinations and feeling "high" to dizziness. What I read also said that you should avoid taking it if you are on other medication that affects the central nervous system, like antidepressants (which my love is on) as they can enhance the effects of marinol. We were told practically nothing about the medication when it was prescribed, just that it would hopefully help with the nausea. No information on side effects to look for or anything else was mentioned. I am extremely ticked off about this. Phenergan also listed confusion as a possible side effect, as did the Ativan. I also found out that the Ativan is actually a benzodiazapine (which can be addictive) and is most commonly used for anxiety. We were again given none of this information; all we were told was that it would help the nausea and stimulate my love's appetite. I am livid. I feel like shaking some medical "professionals" until their eyeballs fall out of their heads. When I am prescribed new medications, I always ask about side effects and try to get as much information as possible, but all the meds I am prescribed are for mental health issues and I've had a lot of negative side effects before from such medications. When I go to a doctor that isn't for mental health and they prescribe me something for nausea or a cold or an infection, I don't normally ask about side effects, I guess I just assume that the medication they are giving me is a) for the condition I am saying is ailing me, b) for what the doctor says it is for, and c) if there is any important information I should know regarding side effects and such, that the doctor will take the time to tell me about them. Apparently in the world of oncology, anything can be used for nausea and patients don't need to know anything about potential side effects or issues. Can you tell I'm angry?
Which brings us to today, Sunday, December 23. My love has still had some confusion throughout the day. Everything from thinking that my love was able to get up and walk across a room to the bathroom without help (which has not been possible for at least a month), to thinking my love had put pizza in the microwave (again thinking my love had gotten up and walked to the microwave alone), to having very little grasp on the passage of time, to thinking things were in my love's hand or lap that weren't there. Many times my love realized after a minute or two that my love was confused and things weren't there or were different than my love thought, while other times my love was adamant that my love was correct and got very frustrated and agitated. It's been a rough week in general, but these last 30 hours have been particularly hard. It reminds me of when I was a caregiver and worked with clients with dementia, and that is terrifying when it is your 23 year old partner whom you love and care about. It has also reminded me several times of when my love was in the hospital for the first surgery. At that time my love was on morphine and got really confused. It is really hard to watch as well as frustrating at times because what do you say when the person you love gets angry and raises their voice at you because you try to tell them that you put the pizza in the fridge, but they think that they just put it in the microwave. It probably sounds stupid and trivial, but it's hard to help someone who is yelling at you because they are sure they're right when really they have no clue what's going on.
This morning after breakfast when my love was still having a lot of confusion, my love's parents and I were concerned because we didn't know how long the medication would be in my love's system and when we should be worried if the confusion hadn't ended. The pharmacy my love's family uses is closed until after the holidays, but I realized that the Walgreens by us is a 24 hour pharmacy, so I drove there and asked the pharmacist about the medications. I told him that my love was having confusion and he told me that, yes, all three of the medications can cause that and that by starting all three, the possibility of having confusion increased. I told him that my love had stopped two of the three, as per the on call oncologist, and asked how long those medications stay in one's system. He said that they can be in your system for a day or two, so if after two days my love was still having confusion to talk to the oncologist about stopping the third new medication. He also said that if it was one of the medications we stopped, that we would be seeing less confusion as it lessened in my love's system, which we have been. He didn't seem extremely concerned, especially when I told him that my love's confusion was less today after stopping the medication last night, which was encouraging to me and my love's parents. So yeah, hopefully we will see marked improvement in the morning. My love has also been very tired today and has slept a lot of the day, who knows if that's a side effect thing (I know the ativan can make you sleepy they said, which makes sense if it's an anti-anxiety med) or an overexertion thing or a combination of the two.
I am hoping and praying things are better tomorrow. If not, we'll probably call the doctor again. Blah, I think it is about time for things to get better instead of more challenging.
Again, I'll try to catch everyone up more later. If you have any questions, feel free to call me too.
Hugs and love to everyone!
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