Well I have posted a couple of updates/panic attack sharing on my facebook page. So if this is a repeat...sorry.
02/15/2011- Tuesday night was just plain miserable for Jeremie. His pain was at intolerable levels, and then became impossible to handle. Severe pain mixed with high doses of pain medication = delusions. He was angry (uh duh) and not super helpful with his "medical helpers" aka Nurses and CNA's. I stayed at the hotel that night, as we were booked there until Thursday morning. I arrived for his 1st total body irradiation appointment at 0900. I knew Jeremie had been struggling. He called at 4:00 that morning that his pain was out of control, but as we were talking the pain specialists walked in the room. He seemed to have calmed down. Then he called me again to let me know what time the radiation appointment was.
So then I get a call as I just found Jeremie in an exam room (huh?). The call was from his cell-phone. That just plan freaked me out. I answered it and it was his nurse for the day. Jeremie loves this nurse. This nurse really understands us, and we both feel very close to him. He really explains things from his perspective and we respect him tremendously for his honesty. He lays out how the morning has gone. Explains that Jeremie is in the exam room because he is refusing to do the radiation. And they have been working on getting things under control. He said, and I don't think I will ever forget words said like this to me "Get him to do the radiation Cori, or he dies". Uh...okay. Will do. Put on my best psych-nurse hat and went to work.
So how does one tell another person in the most excruciating pain of their life to keep going? How do I and what do I find to motivate him? And the answer was nothing. To him in that moment death was the sweetest gift that could be offered. Except that it couldn't be offered soon enough. I just told him to get up, we were going in and getting it done. And he did. I wish I could say something great and magical happened. In a way it did, cause he just got up. Painstakingly of course. Something that should have taken 40 minutes for the first treatment, took 4 hours. He couldn't stand up. He had to restart several times.
Got a lot of medicine in the poor man. I can't believe he can even stand up with what he is having put in his body to stave off some of the pain. He got through the second treatment. Last night I decided to check out of the hotel early. There was no way we were going to have a morning like that again. So that started with having a good night. I didn't care if I stayed up forever. That morning was just plain awful. My little plans worked well. He had a pretty good night, and a great morning. Considering how the last few days have gone.
He officially has two more days of radiation twice per day. Then Sunday he begins the chemo portion of getting ready for his transplant. I'm hoping as the treatment progress his pain lessens. It seems to be in tiny amounts.
I appreciate the opportunity to share in this manner. It helps me to process things. I know people read it for updates. But this blog is an easier way for me to share. I am allergic to tears, they give me a migraine and make me non-functional for days. Strong emotions are things that are going to have to be dealt with when I have a minute. Right now...don't have a minute. This venue of sharing information, lets me share without the emotional side-effects. So I appreciate it, and all of you for listening to my emotional ramblings while I share.
Lots of Love and appreciation,
Cori
Thursday, February 17, 2011
Monday, February 14, 2011
02/14/2011
We arrived in Salt Lake last night. We both had a terrible night. We called the on-call oncologist last night to get an increase in pain medication. It didn't really touch Jeremie at all. So no sleep.
We arrived for the pulmonary function test (tests lung function, chemo and radiation affect lung function, need to make sure they aren't in bad shape before we go into transplant). Jeremie was in too much pain to take deep breaths, and we didn't want to "fail" the test. We decided to skip the test and go straight to the BMT (Bone Marrow Transplant) Clinic.
They asked if Jeremie would want to be admitted before Thursday. I of course said "Please! Please! Please!". Jeremie was admitted :-) Put on a different type of pain medication and pump. Pain has definitely decreased to more manageable levels. He was started on the medication to increase epithelial cells along the digestive tract. As these cells are the most susceptible to ulcerations during radiation and chemotherapy causing terrible problems. Usually this medication is given once a day for three days. They are taking the combined dose of those three days and splitting it to give it over two days instead. They are moving his radiation/chemotherapy/transplant date up by one day. It looks like 02/24/2011 is our day for transplant.
And of course we got to go over all the lovely potential problems that can pop up with transplant. That alone just makes you want to run and hide. It definitely isn't morale boosting. Sometimes I am bit nervous that Jeremie is going to change his mind. And of course they throw out "you have until we start radiation to change you mind". That just makes you feel great...NOT. We can't say they didn't warn us.
I guess I think of it a bit differently, than just plain statistical odds. If you think about it, Jeremie and I had Alex as teenagers, were married as teenagers and we are still married (happily), that is super rare! So we are already a statistical oddity. I just say take your statistics and... well you know ;-)
Love to all,
Cori
We arrived for the pulmonary function test (tests lung function, chemo and radiation affect lung function, need to make sure they aren't in bad shape before we go into transplant). Jeremie was in too much pain to take deep breaths, and we didn't want to "fail" the test. We decided to skip the test and go straight to the BMT (Bone Marrow Transplant) Clinic.
They asked if Jeremie would want to be admitted before Thursday. I of course said "Please! Please! Please!". Jeremie was admitted :-) Put on a different type of pain medication and pump. Pain has definitely decreased to more manageable levels. He was started on the medication to increase epithelial cells along the digestive tract. As these cells are the most susceptible to ulcerations during radiation and chemotherapy causing terrible problems. Usually this medication is given once a day for three days. They are taking the combined dose of those three days and splitting it to give it over two days instead. They are moving his radiation/chemotherapy/transplant date up by one day. It looks like 02/24/2011 is our day for transplant.
And of course we got to go over all the lovely potential problems that can pop up with transplant. That alone just makes you want to run and hide. It definitely isn't morale boosting. Sometimes I am bit nervous that Jeremie is going to change his mind. And of course they throw out "you have until we start radiation to change you mind". That just makes you feel great...NOT. We can't say they didn't warn us.
I guess I think of it a bit differently, than just plain statistical odds. If you think about it, Jeremie and I had Alex as teenagers, were married as teenagers and we are still married (happily), that is super rare! So we are already a statistical oddity. I just say take your statistics and... well you know ;-)
Love to all,
Cori
Saturday, February 12, 2011
02/12/2011
The past few days have been exhausting. Jeremie had to be admitted on Wednesday. His pain was out of control. He was admitted and put on a pain pump. Thursday he was released with the pain pump. So we are at home until tomorrow night, when we leave for Salt Lake.
He is sort of a monster, that husband of mine ;-). We are sort of opposites. I'm super conservative and wanted him to be sent to LDS hospital to get this show on the road. Experience has shown us that a couple days of chemo and three treatments of radiation completely get rid of his pain. So that was my thought. Jeremie's thought was to stay home until we were scheduled to go up, and come home on the pain pump. I didn't argue, and he won by default (yup I'm a sucker).
New pain pumps are much easier to program than when I was playing with them as a nurse ;-) So very grateful for this type of technology and that we can be at home. See I'm trying to see his side :-)
I have to laugh because Jeremie's whole reason he wanted to stay home this weekend was for the Pine-wood derby (the one with the scouts). He told our oncologist we had a "big family function" and he didn't want to miss out. Ha Ha Ha!!! Well we are going to postpone pine-wood derby for next year (Jeremie HAS to help with the boys cars!). And I'm taking them to Laser Mania instead. They weren't too sad.
I said a prayer the other day (hope you don't mind I'm getting personal), that I would be able to handle everything coming at us. That I would be able to push him when he needed it and back off when he needed it. It is a difficult thing for me to judge. I have seen and experienced people suffering with pain. I have felt that I was able to help with controlling their pain or help them move through the discomfort. I felt some ability to help. When it comes to Jeremie, I'm desperate though. I hate it when he hurts. I can feel my soul ripping apart when he is suffering. It is terrible to lose my objectivity.
In some ways it has started me down a path of acceptance. I thought I had accepted so much of what I cannot control. I just didn't know if mentally I was going to be able to accept not having him by my side until we were 90 years old. After Wednesday night, I know I cannot stand to see him suffer, just so he is by my side. I thought I learned a lot of this a long time ago. But I'm learning that everything I thought I knew, doesn't apply to Jeremie...as always.
Oh I wish I could fast-forward to Friday afternoon, and hope his pain is gone...
Well next week will be fast and furious. I will try and update as things progress towards transplant. Tentative date for transplant is 02/25/11. Just a couple of days after Phoenix's birthday.
Love you all,
Cori
He is sort of a monster, that husband of mine ;-). We are sort of opposites. I'm super conservative and wanted him to be sent to LDS hospital to get this show on the road. Experience has shown us that a couple days of chemo and three treatments of radiation completely get rid of his pain. So that was my thought. Jeremie's thought was to stay home until we were scheduled to go up, and come home on the pain pump. I didn't argue, and he won by default (yup I'm a sucker).
New pain pumps are much easier to program than when I was playing with them as a nurse ;-) So very grateful for this type of technology and that we can be at home. See I'm trying to see his side :-)
I have to laugh because Jeremie's whole reason he wanted to stay home this weekend was for the Pine-wood derby (the one with the scouts). He told our oncologist we had a "big family function" and he didn't want to miss out. Ha Ha Ha!!! Well we are going to postpone pine-wood derby for next year (Jeremie HAS to help with the boys cars!). And I'm taking them to Laser Mania instead. They weren't too sad.
I said a prayer the other day (hope you don't mind I'm getting personal), that I would be able to handle everything coming at us. That I would be able to push him when he needed it and back off when he needed it. It is a difficult thing for me to judge. I have seen and experienced people suffering with pain. I have felt that I was able to help with controlling their pain or help them move through the discomfort. I felt some ability to help. When it comes to Jeremie, I'm desperate though. I hate it when he hurts. I can feel my soul ripping apart when he is suffering. It is terrible to lose my objectivity.
In some ways it has started me down a path of acceptance. I thought I had accepted so much of what I cannot control. I just didn't know if mentally I was going to be able to accept not having him by my side until we were 90 years old. After Wednesday night, I know I cannot stand to see him suffer, just so he is by my side. I thought I learned a lot of this a long time ago. But I'm learning that everything I thought I knew, doesn't apply to Jeremie...as always.
Oh I wish I could fast-forward to Friday afternoon, and hope his pain is gone...
Well next week will be fast and furious. I will try and update as things progress towards transplant. Tentative date for transplant is 02/25/11. Just a couple of days after Phoenix's birthday.
Love you all,
Cori
Thursday, February 3, 2011
02/03/2011
Alrighty, we heard from LDS in regards to planning the cord-blood transplant. We are TENTATIVELY looking at February 14th'ish to be going to Salt Lake to begin the process. Jeremie will be having multiple tests (repeat) to make sure he is (again) healthy for transplant. It's an insurance thing.
Jeremie has a really difficult leukemia. It likes to "hide" and manifest it self in abnormal ways. Such as making tumors during chemotherapy treatment, hiding in his central nervous system and causing abnormal marrow signal on MRI's. I'm giving this explanation, as to explain why our "good" news doesn't really give us a lot of information. Or something to hang our hat on.
Jeremie's bone-marrow biopsy came back negative (so far, still testing for his specific type of mutation that causes his type of leukemia). They measure this by looking at the number of blasts in his bone-marrow. Blasts are (again...I'm simplistic) new cells (think newborn) that have not differentiated and decided what they are going to be when they grow-up. Of course there are normal blasts in every one's bone-marrow. So the very small piece of bone that they took for biopsy is negative. That doesn't mean it is negative elsewhere in the body. See what I mean, by good news doesn't really give us a lot of info?
To diagnose acute myelocytic leukemia there needs to be 20% or greater blasts in the bone marrow. This is essentially the danger behind leukemia, if your bone marrow fills with blasts and don't grow-up to be platelets, white blood cells, red-blood cells etc (K...really being simplistic but you get the point). Then you have no way to support your cells, tissue, organs and fight infections, etc. This is why leukemia stinks. Jeremie's pain comes from his marrow being "full" of leukemic cells (blasts or immature cells that have trisomy 8 with NPMI mutation- his type of leukemia) that push on the bone from the inside out. The back pain he is experiencing is "symptomatic" of leukemia. See the problem with thinking that a negative bone-marrow biopsy is the sure fire way of see if his leukemia is there or not?
So back to our plan. After a good month of consideration, going to California and pondering, praying and considering every option available. We decided that the cord-blood transplant is the best thing for our family, and for Jeremie.
So of course we still would love your prayers! This is an exciting and scary time. But a time we are full of love and hope. Thank you all for your continued love, and continued prayers.
LOVE!
Cori & Jeremie
Jeremie has a really difficult leukemia. It likes to "hide" and manifest it self in abnormal ways. Such as making tumors during chemotherapy treatment, hiding in his central nervous system and causing abnormal marrow signal on MRI's. I'm giving this explanation, as to explain why our "good" news doesn't really give us a lot of information. Or something to hang our hat on.
Jeremie's bone-marrow biopsy came back negative (so far, still testing for his specific type of mutation that causes his type of leukemia). They measure this by looking at the number of blasts in his bone-marrow. Blasts are (again...I'm simplistic) new cells (think newborn) that have not differentiated and decided what they are going to be when they grow-up. Of course there are normal blasts in every one's bone-marrow. So the very small piece of bone that they took for biopsy is negative. That doesn't mean it is negative elsewhere in the body. See what I mean, by good news doesn't really give us a lot of info?
To diagnose acute myelocytic leukemia there needs to be 20% or greater blasts in the bone marrow. This is essentially the danger behind leukemia, if your bone marrow fills with blasts and don't grow-up to be platelets, white blood cells, red-blood cells etc (K...really being simplistic but you get the point). Then you have no way to support your cells, tissue, organs and fight infections, etc. This is why leukemia stinks. Jeremie's pain comes from his marrow being "full" of leukemic cells (blasts or immature cells that have trisomy 8 with NPMI mutation- his type of leukemia) that push on the bone from the inside out. The back pain he is experiencing is "symptomatic" of leukemia. See the problem with thinking that a negative bone-marrow biopsy is the sure fire way of see if his leukemia is there or not?
So back to our plan. After a good month of consideration, going to California and pondering, praying and considering every option available. We decided that the cord-blood transplant is the best thing for our family, and for Jeremie.
So of course we still would love your prayers! This is an exciting and scary time. But a time we are full of love and hope. Thank you all for your continued love, and continued prayers.
LOVE!
Cori & Jeremie
Saturday, January 29, 2011
01/29/2011
Jeremie has had bad back pain starting on Monday, when we were in California. I also woke up with a stiff back, shoulders and neck. I attributed my discomfort from the horrific bed we slept in. Jeremie's seemed a bit different. And of course any new pain with Jeremie makes my hair stand on end, anticipating the worse thing it could possibly be. We did bring up the discomfort Jeremie was having to the Doc at City of Hope. When we left we knew we would be having new orders for an MRI of his thoracic, cervical and lumbar spine, and also a bone marrow biopsy.
Jeremie went in Wednesday evening for the MRI. Back pain still pretty severe. Thank goodness for pain medication! LDS called Thursday morning, as they had received my message from Tuesday regarding the cord-blood transplant. Our coordinator explained that they would receive results from Jeremie's bone-marrow biopsy by Wednesday next week, if he had the bone-marrow with our oncologist on Monday 1/31/11. And we would hear from them then, with how to proceed. I did explain that we had an MRI done the night before. They would have access to the results as well.
Our oncologist here in St. George called on Thursday evening, explaining that the MRI showed leukemia in the marrow space in the spine. And that we should act as quickly as possible to move towards cord-blood transplant. We didn't have the time to figure out which type of chemo to use if we decided to go with the "containment strategy", as the leukemia is aggressive.
We will still have our bone-marrow biopsy done here in St. George on Monday. And I am assuming we will then hear from LDS on Wednesday with our plan. It is scary as we both just want to get it done and over with. Decision made, now lets go. But of course it just doesn't happen that way. I can only imagine the discussions and planning that are having to take place.
Jeremie is more positive about going through the transplant procedure. We both understand the risks and benefits completely. And it has been a blessing to have a month to discuss all the pros and cons with it. And even though I didn't love California or was very impressed, we learned a great deal. My biggest hope to have, is that Jeremie will have peace with the decisions that he has to make. I of course weigh in ;-) But it is so important to me that he discovers, and moves through this process with peace. When none of the options are great, it makes the decisions so difficult. And his biggest fear is somehow letting me or our kids down. Crazy isn't it? I explain, and hope that he can tell he isn't capable of letting us down. No matter his choice in how to proceed.
I'm starting to recognize triggers of extreme emotion lately. It is good, but difficult for me to share feedback without coming across as hurtful or mean. It is a horrible personality flaw! My latest trigger is the phrase "keep fighting". I know that it is said with love, and hope, and a sense that we can conquer. It also implies control, where none exists. It it is a dagger in my heart to hear these words (I know silly huh?).
I know that my sweet Jeremie struggles with the perception of him giving up if he doesn't make this choice or that choice. So when I hear or someone tells me to not give up the fight...what fight? There is not an entity we have control of. We aren't running a race and have to keep our feet moving. We have no control over the events of cancer and how it chooses to unfold. We have choices and consequences. We have love, faith, hope and commitment to our family and our beliefs. There is no fight. There is no such thing as giving up. There is existence and acceptance. I also understand that we live with this everyday. There isn't a moment that doesn't go by that leukemia isn't on our minds, and we get to see what it causes. We live with the miracles of cancer and the sadness.
I share these thoughts, as I hope that we can have sensitivity in this scary time. That we can focus on whatever unfolds. I love you all so much, the thoughts, love, prayers, support everything, everyone does and has continued to do...is amazing! And so appreciated. I don't know what we would do if we didn't know we had your love and prayers at this time. I can't tell you what it feels like...what a miracle!
Lots of Love,
Cori
Jeremie went in Wednesday evening for the MRI. Back pain still pretty severe. Thank goodness for pain medication! LDS called Thursday morning, as they had received my message from Tuesday regarding the cord-blood transplant. Our coordinator explained that they would receive results from Jeremie's bone-marrow biopsy by Wednesday next week, if he had the bone-marrow with our oncologist on Monday 1/31/11. And we would hear from them then, with how to proceed. I did explain that we had an MRI done the night before. They would have access to the results as well.
Our oncologist here in St. George called on Thursday evening, explaining that the MRI showed leukemia in the marrow space in the spine. And that we should act as quickly as possible to move towards cord-blood transplant. We didn't have the time to figure out which type of chemo to use if we decided to go with the "containment strategy", as the leukemia is aggressive.
We will still have our bone-marrow biopsy done here in St. George on Monday. And I am assuming we will then hear from LDS on Wednesday with our plan. It is scary as we both just want to get it done and over with. Decision made, now lets go. But of course it just doesn't happen that way. I can only imagine the discussions and planning that are having to take place.
Jeremie is more positive about going through the transplant procedure. We both understand the risks and benefits completely. And it has been a blessing to have a month to discuss all the pros and cons with it. And even though I didn't love California or was very impressed, we learned a great deal. My biggest hope to have, is that Jeremie will have peace with the decisions that he has to make. I of course weigh in ;-) But it is so important to me that he discovers, and moves through this process with peace. When none of the options are great, it makes the decisions so difficult. And his biggest fear is somehow letting me or our kids down. Crazy isn't it? I explain, and hope that he can tell he isn't capable of letting us down. No matter his choice in how to proceed.
I'm starting to recognize triggers of extreme emotion lately. It is good, but difficult for me to share feedback without coming across as hurtful or mean. It is a horrible personality flaw! My latest trigger is the phrase "keep fighting". I know that it is said with love, and hope, and a sense that we can conquer. It also implies control, where none exists. It it is a dagger in my heart to hear these words (I know silly huh?).
I know that my sweet Jeremie struggles with the perception of him giving up if he doesn't make this choice or that choice. So when I hear or someone tells me to not give up the fight...what fight? There is not an entity we have control of. We aren't running a race and have to keep our feet moving. We have no control over the events of cancer and how it chooses to unfold. We have choices and consequences. We have love, faith, hope and commitment to our family and our beliefs. There is no fight. There is no such thing as giving up. There is existence and acceptance. I also understand that we live with this everyday. There isn't a moment that doesn't go by that leukemia isn't on our minds, and we get to see what it causes. We live with the miracles of cancer and the sadness.
I share these thoughts, as I hope that we can have sensitivity in this scary time. That we can focus on whatever unfolds. I love you all so much, the thoughts, love, prayers, support everything, everyone does and has continued to do...is amazing! And so appreciated. I don't know what we would do if we didn't know we had your love and prayers at this time. I can't tell you what it feels like...what a miracle!
Lots of Love,
Cori
Tuesday, January 25, 2011
01/25/2011
We had our appointment at City of Hope yesterday.
First...I HATE CALIFORNIA! EWWWW... NEVER will I do that again! That was awful. I now know why everyone moves from there. YUCK!
K...moving on. We arrived at City of Hope. First impression...gross and very dirty. Want to hear another issue I have with the medical profession? Please bear in mind I work in this profession. ZERO CUSTOMER SERVICE. If you want your hospital to be considered the best of the best. Please hire someone to do the cleaning. Please do not make cancer patients pay for Valet parking. Please do not make them stand in line like cattle awaiting slaughter. Not a very good first impression! Next, I know you do this every day but it isn't every day that people are fighting for their lives and offering themselves up to you to poison them. Please give them the courtesy of explaining the process and again, having some customer service. Whew...I think I can move on now.
Next we met with an oncologist. His demeanor was that of a scared cat caught in the corner by a large dog. Oh quick, another issue I have...if you have a three inch size record that has been sent...please don't waste our precious time with you asking for a repeat of everything you should have read before you even saw us!!!!! Grrrr. So once we got to repeat our now infamous story that is in a very large chart, we finally were able to ask some questions.
"His" recommendation was "if" you are disease free, then go towards the transplant route. Knowing the details of the cord-blood transplant, his opinion was that this was a good route to go. "IF" Jeremie is disease free, then a cord-blood transplant would give him approximately 40-50% cure rate. "IF" the disease comes back within two years of transplant, then move to a containment strategy. "IF" we really wanted to see if the 9/10 donor bone marrow match was a preferable match, instead of cord-blood, then Jeremie needs to do another consolidation with Clofarabine (chemotherapy) ASAP with another bone-marrow biopsy and MRI of T & C spines. Meanwhile testing where the mismatch is on the donor bone marrow. Or "IF" Jeremie is disease free then going a head with the cord-blood transplant as soon as possible.
So we didn't receive any magical or Ah-Ha news (yes, we were secretly hoping). It definitely gives us more faith in LDS hospital. Jeremie feels better about possibly going down the transplant route. And we can stay in network with our insurance and move on with this process.
Called our oncologist office today and set up an appointment for a bone-marrow biopsy. Called and left a message to consult/conference call with LDS to see their thoughts and opinions. Now just waiting to move on. Jeremie isn't feeling the best. His back has started hurting again. We are hoping it has been because of all the time we have been in the car over the last two days. My gut says it isn't because of that. Course my gut is paranoid these days.
And by the way...since I'm on a rant today. I work for an agency that primarily works with medicaid-only clients. I know my clients don't have another choice in providers, I know they don't want to come in, and I know that it is a scary process. Everyone I work with is exceptional in the service and commitment they have to our population. Our buildings are clean, beautiful and welcoming. AND OUR CLIENTELE DOESN'T HAVE A CHOICE. So if you want people to come to your place of business by CHOICE, have some customer service and professionalism. Grrrr!
Can you tell when I'm stressed were I like to take my frustration out at??? ;-) I seriously need to exercise!
Well until we have more news....
Love,
Cori
First...I HATE CALIFORNIA! EWWWW... NEVER will I do that again! That was awful. I now know why everyone moves from there. YUCK!
K...moving on. We arrived at City of Hope. First impression...gross and very dirty. Want to hear another issue I have with the medical profession? Please bear in mind I work in this profession. ZERO CUSTOMER SERVICE. If you want your hospital to be considered the best of the best. Please hire someone to do the cleaning. Please do not make cancer patients pay for Valet parking. Please do not make them stand in line like cattle awaiting slaughter. Not a very good first impression! Next, I know you do this every day but it isn't every day that people are fighting for their lives and offering themselves up to you to poison them. Please give them the courtesy of explaining the process and again, having some customer service. Whew...I think I can move on now.
Next we met with an oncologist. His demeanor was that of a scared cat caught in the corner by a large dog. Oh quick, another issue I have...if you have a three inch size record that has been sent...please don't waste our precious time with you asking for a repeat of everything you should have read before you even saw us!!!!! Grrrr. So once we got to repeat our now infamous story that is in a very large chart, we finally were able to ask some questions.
"His" recommendation was "if" you are disease free, then go towards the transplant route. Knowing the details of the cord-blood transplant, his opinion was that this was a good route to go. "IF" Jeremie is disease free, then a cord-blood transplant would give him approximately 40-50% cure rate. "IF" the disease comes back within two years of transplant, then move to a containment strategy. "IF" we really wanted to see if the 9/10 donor bone marrow match was a preferable match, instead of cord-blood, then Jeremie needs to do another consolidation with Clofarabine (chemotherapy) ASAP with another bone-marrow biopsy and MRI of T & C spines. Meanwhile testing where the mismatch is on the donor bone marrow. Or "IF" Jeremie is disease free then going a head with the cord-blood transplant as soon as possible.
So we didn't receive any magical or Ah-Ha news (yes, we were secretly hoping). It definitely gives us more faith in LDS hospital. Jeremie feels better about possibly going down the transplant route. And we can stay in network with our insurance and move on with this process.
Called our oncologist office today and set up an appointment for a bone-marrow biopsy. Called and left a message to consult/conference call with LDS to see their thoughts and opinions. Now just waiting to move on. Jeremie isn't feeling the best. His back has started hurting again. We are hoping it has been because of all the time we have been in the car over the last two days. My gut says it isn't because of that. Course my gut is paranoid these days.
And by the way...since I'm on a rant today. I work for an agency that primarily works with medicaid-only clients. I know my clients don't have another choice in providers, I know they don't want to come in, and I know that it is a scary process. Everyone I work with is exceptional in the service and commitment they have to our population. Our buildings are clean, beautiful and welcoming. AND OUR CLIENTELE DOESN'T HAVE A CHOICE. So if you want people to come to your place of business by CHOICE, have some customer service and professionalism. Grrrr!
Can you tell when I'm stressed were I like to take my frustration out at??? ;-) I seriously need to exercise!
Well until we have more news....
Love,
Cori
Saturday, January 22, 2011
01/22/2011
I like La La Land...it has been such a nice place to live in the last few weeks. So very scared of the reality that is going to be smacking us in the face on Monday. Sort of happy that Jeremie hasn't been having 3 times per week blood work. Don't have to micro-obsess about every stinking number.
Jeremie continues to look as fabulous as ever. I think it takes people by surprise :-) And scares me to death. There are parts in my heart that just can't take it anymore. I just want to pretend this was all a joke, and we just get to continue living our lives. I can't tell you what a reprieve it has been the last month. Just to have our Daddy all to ourselves. I forgot what it had been like to get so annoyed with him ;-) hee hee hee.
Whew...having a teary day. Getting nervous and anxious about going to California. I've never been to California. So that will be another adventure we get to share together. The kids are going to be staying behind. PePe and MeMe (Jeremie's parents) are super busy at the shop and need Alex. Scarlett and the boys have school, so they are choosing to sleep at home. I just can't stand being away and separating myself from either my husband or my babies. It stinks having to choose all the time. Yet I feel so blessed that the kids are older, pretty self sufficient (which I'm not appreciating), and have proven time and time again how responsible they are. But I've also told the neighbors to make sure my house doesn't burn down ;-) I think that helps!
It is funny...but I'm having the hardest time right now. I think about the last several months and felt I could move through all the various emotions and fear. And now I'm panicking?? What is up with that?? I think it is because of the unknown...it is a theory anyway. So if you hear of stories of me needing my own psychiatric help, you will know why ;-)
Please, continue your prayers! Especially over the next several days...we believe in miracles :-)
Love,
Cori
Jeremie continues to look as fabulous as ever. I think it takes people by surprise :-) And scares me to death. There are parts in my heart that just can't take it anymore. I just want to pretend this was all a joke, and we just get to continue living our lives. I can't tell you what a reprieve it has been the last month. Just to have our Daddy all to ourselves. I forgot what it had been like to get so annoyed with him ;-) hee hee hee.
Whew...having a teary day. Getting nervous and anxious about going to California. I've never been to California. So that will be another adventure we get to share together. The kids are going to be staying behind. PePe and MeMe (Jeremie's parents) are super busy at the shop and need Alex. Scarlett and the boys have school, so they are choosing to sleep at home. I just can't stand being away and separating myself from either my husband or my babies. It stinks having to choose all the time. Yet I feel so blessed that the kids are older, pretty self sufficient (which I'm not appreciating), and have proven time and time again how responsible they are. But I've also told the neighbors to make sure my house doesn't burn down ;-) I think that helps!
It is funny...but I'm having the hardest time right now. I think about the last several months and felt I could move through all the various emotions and fear. And now I'm panicking?? What is up with that?? I think it is because of the unknown...it is a theory anyway. So if you hear of stories of me needing my own psychiatric help, you will know why ;-)
Please, continue your prayers! Especially over the next several days...we believe in miracles :-)
Love,
Cori
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