I have not turned out to be the avid blogger I pictured myself being this summer. I thought it would be lot's of fun to be writing all the time, but it seems to be more of a chore to try and jazz up and/or sugar coat the life of a bone marrow transplant gal. I have consciously been putting off writing another blog because, in all honesty, I just have not felt up to writing a sunny post of life here in Utah. If it seems like my posts have gradually been growing less cheerful as time goes on, I suppose that is pretty accurate in terms of my attitude for the past little while. Oddly enough, I think I was actually more excited and optimistic at the beginning of the transplant, despite the threat of it ending in death, than I feel now in the last days of my time here (which is exactly 17 days and counting). Wow, this summer flew by!
My dreary mood has been exacerbated by the fact that my better half has officially moved out of Utah. He will be back for weekend visits, but life has resumed in Idaho for my love. Rorie and I have officially made it through our first week without him, and I can't wait to see him tomorrow! I feel left behind, and utterly useless. Life here has lost all of its appeal and adventure without my best friend to share it with. Now I feel lonely, and a bit scared of being in the city alone and of the possibility that--unlikely as it is--something will happen with the transplant and there won't be anyone here to help. Of course, Colten has loads of family all around me, and in a true emergency there would be help, but it is just not the same as having him around.
Without having another adult here to talk to, I have started to think--all the time. I am a dweller. I will dwell on problems and worries until they consume my every waking thought without someone around to distract me. So what have I come up with? Why the onset of sadness? Well, the transplant is over. Technically I am not out of the woods until three years out, but for all intensive purposes the transplant over. So, now I am waiting for the news. What news, you ask? The news that it did not work. The news that the cancer is still there, or, even better, growing again. The news that, yet again, another horrific treatment plan failed. I am so sick of finding out again and again that this tenacious cancer is still residing in me despite everything the doctors come up with. Yes, it is a very negative view, but there you have it.
I feel like I am on a downward spiral. My hair is still falling out in gobs and is about equally bald and still covered. My doctors seem amazed at this turn of events and can offer no real explanation other than assuming it is the Tacro, and the stress of the transplant in general, and trying to reassure me it will "most likely" start growing back in the next year or so. One of my doctors actually asked me to remove my hat so he could look at my hair because he seemed to think I was exaggerating. His face would have been priceless if it did not make me feel absolutely terrible about myself. Self-esteem? Self-confidence? Not so much. There are only so many times you can have people staring at your head in disgust before you wear a hat 24/7. I would shave it all off, but I am worried nothing will grow back. Truly, half the reason cancer is so horrible is because of your appearance while undergoing treatments. To feel sick and sore is one thing, but to feel bad AND look bad just adds insult to injury.
My greatest sadness is also my most selfish. I love every sister (blood, in-law, and adopted) I have more than chocolate (sweet cravings...). But, it seems like just about every one of them is pregnant and/or expecting a child in one way or another. Colten and I tried for years, but that dream got shattered pretty effectively with the extreme back and stomach pain requiring an emergency room visit, and ending with x-rays of cancer tumors everywhere. Funnily enough, my transplant doctors, after running endless tests, told me I could probably have children after this transplant (if it was successful) because my body seemed to have repaired itself and looked like a normal 25-year-old woman's body. I have clung to that hope, taking it as a sign that God has a plan, and that after this transplant works I can still have more children. But, lately, it has been weighing on me more and more. I have one smart, beautiful, sweet girl, and that is more than I ever deserved, and more than some couples end up with, I know. But it is the greatest desire of my heart. I am so happy for every lady in my life that has a little one on the way, but my happiness for them does not negate my own sense of loss.
So, this negative, balding, barren lass is not the best of company lately.
This week was probably the worst one I have had in terms of my emotional condition, but (as usual) fairly uneventful in terms of the actual transplant. Rorie has had a sore throat and runny nose all week that we assumed was her allergies, but over the past couple of days I have also developed a very sore throat, so we are hoping nothing worse happens at this point. I still do not have a fever, so no emergency as of yet. I had my first doctor's appointment without Colten on Wednesday, and it was an unpleasant experience. When we started this whole thing, the doctors told me (on TWO separate occasions) that I could go home around 100 days if there were no major complications. Well, there have been no major complications and there is this little thing called "giving notice" when you have a rental contract. We were required to give 60 days notice of our intent to vacate our apartment, and we stressed over having to make the decision only +40 days into the transplant, but we trusted things would be alright. And, as it turns out, they were. So, day +100 is right around the corner, and while nobody said anything about it, I assumed the doctors were on the same page as us. Turns out, not so much. I got the privilege of informing my doctors (who, I have decided, I cannot stand. This hospital is the worst place I have ever received treatment from in my entire life). My P.A. was the first person who I talked to about it, and she proceeded to bite my head off, and inform me that, "They were accustomed to telling patients when they could go home, not to patients telling them when they were leaving." Well, awesome. Glad I could set a precedent. She then told me that she would have to have a conference with the doctor, and I ended up waiting for over an hour (with a 4-year-old) to have a doctor come in and speak with me.
While my doctor was not particularly friendly, she was better than the P.A. I laughed when she came in and said, "I was told you have a question about whether you can leave in the next couple of weeks." I smiled at her and said, "I am not asking, I am telling you. My rental contract ends on September 16th, and I will be going home." From there it was smoother sailing, until she brought up the dreaded bone marrow biopsy. I hate, hate, HATE bone marrow biopsies. After deep contemplation, and vivid memories of the previous two, I have decided I will never undergo one again as long as I live. So, I am supposed to be having one tomorrow, according to "protocol." She wanted to push it back two weeks until they do my +100 day workup "for my convenience." Since we were talking about MY convenience, I thought it might be a good time to mention I did not want to have another one done. I asked her why it was medically necessary, and she could not give me an answer. She suggested it was to make sure the bone marrow transplant worked, to which I countered that they had already performed a chimerism test that showed I was 90% my sister and proved that the transplant had, in fact, taken. She then said it was the only way to make sure the cancer had not progressed to my bone marrow. I responded that they had already checked that BEFORE the transplant, and there would be other signs (swollen lymph nodes, back pain, problems breathing, oh, wait...yep...had all those before...think I might notice) before it progressed that far. So, she continued to hedge, but basically ended up agreeing with me that it was not necessary, but more just standard practice (funny, it was not standard practice for my previous transplant). So, I told her I would strongly prefer not to do another one, and left it at that.
Today, I received an email from my coordinator (which is a fancy title that means she does absolutely nothing but set up schedules--without consulting patients about preferable times or days--and then parades around acting like she knows as much as the doctors or the other medical staff around her). Ladee is special lady. Both my sister and I got quite our fill of her just getting things set up pre-transplant, and I was truly hoping to avoid ever dealing with her post-transplant. Anyhow, she set up my schedule for the remainder of my time in Salt Lake, perfectly placing all my appointments on days that Colten cannot be here, and then brusquely ended the email with, "We will have to take your bone marrow because the study requires it. But it will be a bone marrow aspirate, not a biopsy." I love that I am the patient (customer), paying the hospital, and yet I get treated like the employee without an option. There is no medical reason for the bone marrow aspirate--which, by the way, is not a biopsy, but still requires drilling into my bone and sucking stuff out of it, which is the most painful part--but it is simply additional information for their study. I get that without medical studies treatments would be stagnant and never improve to the point of curing patients. I really do. Call me selfish, but I think I have done enough adding to medical studies at this point in my cancer journey and my life. I would just like to stop being poked and prodded, and never see a doctor again for anything other than broken bones, the flu, or all the other things that normal people go to doctors for. Needless to say, I wrote Ladee back and informed her that my doctor here, as well as my doctor back in Pocatello (yes, I actually called him for a second opinion because I want out of it THAT badly) said it was not a medical necessity, and therefore I would not be having another one. She has not responded yet, but I am not looking forward it. She lacks tact and basic respect for other human beings, so that should be a fun conversation.
"Ugh" is all I have to say about this week. I am sad to be leaving Utah, happy to be going home, worried about transplant aftermath and treatment, elated to be mostly done with this hospital, and basically conflicted in every way. I am just counting the hours until tomorrow when I get to see my amazing husband again. This summer, if nothing else, has given me the gift of time with him (and Rora) and I have really begun to see how much he does to take care of me every day. I am so blessed to have been given such an amazing partner in life. What guy marries a woman he knows is diagnosed with terminal cancer? Well, first of all, an eternally optimistic guy who thinks "everything will be fine" no matter what, and second of all, a straight up stud. I love, love, love my other half. :-)
Rorie Moment: Rorie loves dresses, and would wear them every single day (and basically does) if we didn't make her wear something else once in a while. However, she has a problem with pulling them up, or playing like she is wearing pants, and always ends up showing the world her underwear. We solve the problem by putting shorts on underneath dresses, but she has a couple that are so long I occasionally let her go without any shorts. She was wearing one of these dresses, and Colten had been reminding her all day to keep her dress down. We were all sitting out in the living room where she was--typically--sprawled out on the couch with her dress up. Colten reminded her, "Rora! Put your dress down!" She sat up quick as a wink and pulled it down, then explained to Daddy with an innocent look on her face, "Daddy, my knees were just hot."
Something to hold on to: No inspiring quote this time around, but I saw this floating around Facebook and it seemed to come at just the right moment for me, perhaps it will touch someone else as well:
God,
I may not understand how everything will work out, but I trust you. I don't see a way, but I know you will make a way. I have faith that at this very moment you are touching hearts, opening doors, and lining up the right breaks and the right opportunities. Things may look dark and bleak now, but I believe that my dawn is coming.
Amen.
Thursday, August 29, 2013
Sunday, August 4, 2013
Day +58
Well, time for an update! The results from the skin biopsy were inconclusive (just my luck), and while it did not confirm that the rash was GVHD, it also did not rule it out. However, my P.A. said that my eosinophils (the things in your blood that generally go up with GVHD and come down when it is treated) did go down with the treatment of my skin rash--which also is inconclusive because eosinophils go up when you are having an allergic reaction, and also go down when it is taken care of. So, basically, nobody knows. My P.A. felt pretty confident it probably was a tiny bit of GVHD, which is just perfect. :-) I'll take it! Thanks for the continued prayers and happy thoughts flowing my direction, they seem to be doing their jobs.
More great news: my Tacrolimus levels have finally started to level out, and with no severe GVHD we are moving to just one appointment a week now! I am starting to have pretty severe hair loss from the Tacrolimus, another fun little side effect of this lovely drug. Patients typically don't go completely bald, but I do have noticeable balding spots all around my head. I try to tell myself it is just hair, but I would be lying if I said it was not weighing on me. You never realize how important hair is until it starts to look really bad--or until you lose it completely. I have been bald on three separate occasions now, I think I have paid my dues and I am ready for it to start growing back! The doctor said in six months to a year it should start filling back in, but with my thyroid issues there is no telling how well it is really going to grow back. Ah well, as long as I am actually here to agonize over it, I guess I will be thankful for the agony! :-)
The end is definitely in sight. Colten will have to be back in Pocatello by the 26th of August to return to school, and Rora and I will be hanging out in Utah until the 16th of September (Day +101). I am a little nervous to drive around the big city without my hubby, I must confess. Some of my medications have required me not to drive, so Colten has become the unofficial chauffeur and I am not sure I remember how it's done! It will also be lonely and just rough in general after having almost three solid months together, so be thinking of us when that time rolls around. I am so excited to be over halfway through this ordeal, but also pretty terrified to head back to normal life. I realize that we have to go home eventually, and nothing really bad has happened at all, but it is comforting to know that specialists who deal with what I am going through every day are just a few minutes away, whereas in Pocatello they will be much, much further. As much as I disliked having to move to Utah and have not been really satisfied with our hospital experience here, it is still a safety net, and I feel like I am getting ready to step out of my comfort zone. With GVHD potentially cropping up until around three years out of the transplant and a very distressed immune system, it feels like a very big step. I am just concentrating on getting to the end and FINALLY getting this central line pulled out of my chest. I cannot wait! As soon as it heals, I am going swimming, and then taking a shower until there is no more hot water left in our house. :-)
In non-transplant related life, I had another run-in with school issues this week. I contacted my accounting adviser (Ken) to get some advice on books I could be reading and activities I could be doing to stay updated on the material until the spring, and I received a very surprising reply telling me that he would have the administration do special processing for me to attend this fall if I could get my application for the graduate program in and my GRE taken within the next couple weeks. I have a weird relationship with this instructor because he is kind of a hard guy to like--cold, short, unapproachable, the list goes on. Most students fail his classes, or wait for a different professor to teach the class, but I found his teaching style to be an enjoyable challenge. Teaching styles aside, Ken is basically the most intelligent person you could speak with about all things accounting, and is the one who gave me a shot to get in to the program even though my undergraduate degree was in English. He gave me a year to do all the prerequisites, and then said I could join the year-long graduate program. His opinion of me rose with each semester, I think, as did mine of him. I pulled off this past year with a 4.0, but I have never worked so hard or so much in my entire life--and I am barely getting to the graduate program.
The problem now is that I always feel like I have to prove to Ken (my professor) that he made the right decision letting me into the program. When he extended the offer to get me into the graduate program late, it was awesome to know that a professor actually cared and would go out on a limb to help me. Unfortunately, after talking it over with Colten, we decided I would have so much stress over the next two weeks trying to get my GRE taken and going through the application process--let alone the graduate program itself--that it would just not be a good idea. I have a tendency to disregard most advice given to me by doctors, I find most of it to be unnecessary, if not absolutely ludicrous. This will be the first time I actually listen, take a semester off, remove myself from stress as much as possible, and just let my body heal and my new immune system grow. But the decision did not come easily, and now I feel worse knowing that I was just bemoaning being unable to go back to school, and then, once given the opportunity, I made the decision myself to put off going after those dreams of mine. It makes it much worse, somehow. Add to that letting my professor down, being a wuss and taking a semester off after he offered to do whatever was needed to get me in, and I am pretty discouraged with the whole experience. My only hope is that this one time I do everything by the book, the treatment actually works. There are no other options after this, if it doesn't work, I don't know what we'll do. I have to give it the best possible chance of knocking my cancer out of the park.
It is almost amusing to me how much anxiety this accounting program has caused me in just one year. The amusing (and sad) thing is, I don't even like accounting. I actually hate it. But for some reason, I am very good at it (with a lot of hard work). I am mediocre in English--my first love--and regardless of my talent level, there was just not much I could do with the degree (some of my aunts who are English majors, incredibly successful, and personal heroes of mine might disagree, but I digress). I started considering other majors for my graduate degree that would better allow me to support my family financially, and settled on accounting. I will most likely not be the primary bread winner of our household, and may not even have to work once Colten completes his degree, but I still wonder if I will be miserable even working for just a few years. The careers I actually considered for myself over the years were to be a writer, a veterinarian, a helicopter pilot, a marine biologist, and I briefly flirted with being an interior decorator or civil engineer. Accounting never even made the list. Isn't it funny how life pulls you down so many paths that you often end up living a life you could never have even imagined? And how we fight so hard for, and worry so much about, things that really don't even matter to us? Things we don't even like? You'd think with a terminal diagnosis it would be easier to focus on the important things and gain a better perspective, but I think it is just human nature to be ridiculous--at least every now and then. ;-)
Rora Moment: While eating lunch together, Rorie struck up a conversation about God (this happens more and more recently, which thrills me).
"Mommy, God made us, right?"
"Yes, He did."
"And He made the doggies, right?"
"Yes, He did, He made everything."
"And we have lives, right?"
"Yes, we do. God gave us life."
"And God made us happy, right?"
"Yes, Rorie, God did make us happy."
"Cause He only gave us good lives, right? Cause God only gives us good things, not bad things, cause He wants us to be happy, right?"
At which point I just smiled and stared at my daughter and her infinite wisdom.
Something to live by (thank you, Bonna, for the post): "Fear has two meanings: Forget Everything And Run, or, Face Everything And Rise. The choice is yours."
More great news: my Tacrolimus levels have finally started to level out, and with no severe GVHD we are moving to just one appointment a week now! I am starting to have pretty severe hair loss from the Tacrolimus, another fun little side effect of this lovely drug. Patients typically don't go completely bald, but I do have noticeable balding spots all around my head. I try to tell myself it is just hair, but I would be lying if I said it was not weighing on me. You never realize how important hair is until it starts to look really bad--or until you lose it completely. I have been bald on three separate occasions now, I think I have paid my dues and I am ready for it to start growing back! The doctor said in six months to a year it should start filling back in, but with my thyroid issues there is no telling how well it is really going to grow back. Ah well, as long as I am actually here to agonize over it, I guess I will be thankful for the agony! :-)
The end is definitely in sight. Colten will have to be back in Pocatello by the 26th of August to return to school, and Rora and I will be hanging out in Utah until the 16th of September (Day +101). I am a little nervous to drive around the big city without my hubby, I must confess. Some of my medications have required me not to drive, so Colten has become the unofficial chauffeur and I am not sure I remember how it's done! It will also be lonely and just rough in general after having almost three solid months together, so be thinking of us when that time rolls around. I am so excited to be over halfway through this ordeal, but also pretty terrified to head back to normal life. I realize that we have to go home eventually, and nothing really bad has happened at all, but it is comforting to know that specialists who deal with what I am going through every day are just a few minutes away, whereas in Pocatello they will be much, much further. As much as I disliked having to move to Utah and have not been really satisfied with our hospital experience here, it is still a safety net, and I feel like I am getting ready to step out of my comfort zone. With GVHD potentially cropping up until around three years out of the transplant and a very distressed immune system, it feels like a very big step. I am just concentrating on getting to the end and FINALLY getting this central line pulled out of my chest. I cannot wait! As soon as it heals, I am going swimming, and then taking a shower until there is no more hot water left in our house. :-)
In non-transplant related life, I had another run-in with school issues this week. I contacted my accounting adviser (Ken) to get some advice on books I could be reading and activities I could be doing to stay updated on the material until the spring, and I received a very surprising reply telling me that he would have the administration do special processing for me to attend this fall if I could get my application for the graduate program in and my GRE taken within the next couple weeks. I have a weird relationship with this instructor because he is kind of a hard guy to like--cold, short, unapproachable, the list goes on. Most students fail his classes, or wait for a different professor to teach the class, but I found his teaching style to be an enjoyable challenge. Teaching styles aside, Ken is basically the most intelligent person you could speak with about all things accounting, and is the one who gave me a shot to get in to the program even though my undergraduate degree was in English. He gave me a year to do all the prerequisites, and then said I could join the year-long graduate program. His opinion of me rose with each semester, I think, as did mine of him. I pulled off this past year with a 4.0, but I have never worked so hard or so much in my entire life--and I am barely getting to the graduate program.
The problem now is that I always feel like I have to prove to Ken (my professor) that he made the right decision letting me into the program. When he extended the offer to get me into the graduate program late, it was awesome to know that a professor actually cared and would go out on a limb to help me. Unfortunately, after talking it over with Colten, we decided I would have so much stress over the next two weeks trying to get my GRE taken and going through the application process--let alone the graduate program itself--that it would just not be a good idea. I have a tendency to disregard most advice given to me by doctors, I find most of it to be unnecessary, if not absolutely ludicrous. This will be the first time I actually listen, take a semester off, remove myself from stress as much as possible, and just let my body heal and my new immune system grow. But the decision did not come easily, and now I feel worse knowing that I was just bemoaning being unable to go back to school, and then, once given the opportunity, I made the decision myself to put off going after those dreams of mine. It makes it much worse, somehow. Add to that letting my professor down, being a wuss and taking a semester off after he offered to do whatever was needed to get me in, and I am pretty discouraged with the whole experience. My only hope is that this one time I do everything by the book, the treatment actually works. There are no other options after this, if it doesn't work, I don't know what we'll do. I have to give it the best possible chance of knocking my cancer out of the park.
It is almost amusing to me how much anxiety this accounting program has caused me in just one year. The amusing (and sad) thing is, I don't even like accounting. I actually hate it. But for some reason, I am very good at it (with a lot of hard work). I am mediocre in English--my first love--and regardless of my talent level, there was just not much I could do with the degree (some of my aunts who are English majors, incredibly successful, and personal heroes of mine might disagree, but I digress). I started considering other majors for my graduate degree that would better allow me to support my family financially, and settled on accounting. I will most likely not be the primary bread winner of our household, and may not even have to work once Colten completes his degree, but I still wonder if I will be miserable even working for just a few years. The careers I actually considered for myself over the years were to be a writer, a veterinarian, a helicopter pilot, a marine biologist, and I briefly flirted with being an interior decorator or civil engineer. Accounting never even made the list. Isn't it funny how life pulls you down so many paths that you often end up living a life you could never have even imagined? And how we fight so hard for, and worry so much about, things that really don't even matter to us? Things we don't even like? You'd think with a terminal diagnosis it would be easier to focus on the important things and gain a better perspective, but I think it is just human nature to be ridiculous--at least every now and then. ;-)
Rora Moment: While eating lunch together, Rorie struck up a conversation about God (this happens more and more recently, which thrills me).
"Mommy, God made us, right?"
"Yes, He did."
"And He made the doggies, right?"
"Yes, He did, He made everything."
"And we have lives, right?"
"Yes, we do. God gave us life."
"And God made us happy, right?"
"Yes, Rorie, God did make us happy."
"Cause He only gave us good lives, right? Cause God only gives us good things, not bad things, cause He wants us to be happy, right?"
At which point I just smiled and stared at my daughter and her infinite wisdom.
Something to live by (thank you, Bonna, for the post): "Fear has two meanings: Forget Everything And Run, or, Face Everything And Rise. The choice is yours."
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