Tuesday morning after Merrick and I left the Dr.'s office, we both agreed that we felt relieved, hopeful, and peaceful. The emotions we were feeling were on the opposite side of the spectrum compared to our last visit. So we decided to go out and celebrate at one of our favorite places to eat, Hu Hot. (Oh so yummy!)
We were able to visit with just the Dr. for over a half hour. We laid everything out on the table and came with a list of questions and concerns for him that we felt NEEDED to be addressed. We were so thankful he thoroughly explained everything to us and took the time to answer all of our questions.
My white blood cell count jumped up to 13,000. Last week it was at 4,000 so right now it is slightly over the normal range. However, my hemoglobin, red blood cell count, and platlet count is all back within normal range: PRAISE GOD! The Dr. was very pleased with my labs this week. He said this is what "normal" looks like. But I asked him how I can be normal if one week my count is 4,000 and the next week it is 13,000. He explained he doesn't look at it that way. He is encouraged by that because it shows him my body is responding to treatment exactly how it should. When I am on the medication, my white count goes down and when I'm off of it my white count spikes back up. I guess it was a new way of looking at things. He also checked my spleen and was unable to feel it so that means it is back in its place.
He also explained new medication. It is called Sprycel. It too is a chemo drug. This drug is designed to only attack the chromozone that is going haywire and producing an excess of white blood cells. Because this drug is so finetoothed, the side effects should be less severe than my last medication. There still is a long unpleasant list of side effects, but my Dr. really has encouraged me that most people on this drug can tolerate them.
With all of that positivity, Merrick and I thought for a moment we were on cloud nine. Until the next part of the visit, which quickly brought us back to the harsh reality of things. Again, since this drug is so finetoothed and the engineering of it is beyond mindboggling, it comes with an extremely high price tag. So after we visited with the Dr. we visited with the patient advocate. She has been the angel behind the scenes searching for foundations to help us with at least the copay of the drug. She has been submitting forms and making phone calls in order to reach some glimmer of hope. Although she has not found a foundation yet, she was honest that it was not going to be easy because of the price tag on this drug. She assured us that she was not going to quit on us but she also wanted us to be fully aware of what we are dealing with and how the future might pan out when it comes to the cost of this drug. So that my friends is the monsterous, ugly troll that is standing in Merrick and I's path. We are desperately trying to stay calm and know that God has control of the situation but what is left of our patience is about as think as a sheet of paper!
**Prayer Requests for this week:**
- I haven't started the new drug yet. It is sitting on our kitchen table and I ignore it every time I walk by. But I know that my life depends on it, so I will start taking it....pretty soon. I'm just not excited to start feeling like crap again. So please pray that the side effects are minimal and my body will tolerate this new drug.
- Please pray for wisdom. For the Dr., for the patient advocate that is diligently working on our case, and for us. Because of the cost of this drug, Merrick and I are faced with some major financial decisions that most people our age wouldn't even think about. We don't want to do anything hasty, but we need to make some decisions that are not going to be fun or easy!
- Please pray that everything will get worked out for the cost of this drug. That there is a foundationout there that would be able to fund our copays at least.
- Please pray for patience. It feels like that is all we can do is sit and wait....at times the silence is deafening and makes us on the verge of going crazy. We have to keep our composer so we don't start to turn on each other!
Thank you so much for your prayers, love, cards, meals, and donations. We are forever grateful for the acts of kindness that have been brought upon us. What an honor and tremendous blessing!
Thursday, August 23, 2012
Friday, August 17, 2012
YEAH!!! and Ohh?!?
This past Monday, I had my blood checked again and, praise God, my blood levels are on the rise...slowly. My white blood count was up to 4,700. We also realized that my normal range for white count has changed to 5,000-10,000. So really, I am just under normal range- YEAH!! I was also instructed to continue to stay off of my gleevic, so another "vacation" for my body. YEAH!!
While I was talking to the nurse about my blood levels, she very casually mentioned that the Dr. has ordered me to try another chemo drug and they are waiting to hear from our insurance whether or not it will be approved with our policy. While trying to keep my composer, I informed the nurse that nothing has been said or even hinted to the fact that I am switching to another drug. After a few akward "ohs and ums" and applogies she explained that the Dr. wants me to stop with the gleevic and begin trying sprycell (no idea if that is how you spell it or even say it...all I understood was something like that).
That evening, Merrick did a lot of research on this new drug. It has only been around since 2007 where the gleevic has been around for 10 years. However, the people that commented about the drug stated they began on the gleevic but their bodies could not adapt/ handle the side effects. Once they switched to this drug, they noticed a huge improvement. So that was very encouraging! However, the majority of the side effects are similar to the gleevic ones. I guess time will tell how my body reacts to this drug.
Throughout the rest of this week I have been on the phone and signing and faxing back forms to get the ball rolling to start this new drug. We have been warned that our copay for this new drug is almost double than the gleevic. :*( The foundation that helps with copays for gleevic and possibly this drug denied our claim because I am not on Medicare. :*( The patient advocate from Avera has been an absolute gem and is working very diligently on our case to help us find what we need for financial assistance with this drug. We are very thankful for her, her knowledge, and her connections! But at the same time, once again....Merrick and I are trying extremely hard to stay calm and trust the Lord that something will work out. Just right now things do not look as hopeful as we thought, financially.
This coming Monday I will not have to go in for blood work. On Tuesday, I will be going to the Dr. in Sioux Falls for a check up. I will have blood work done the first hour and then see the Dr. the second hour. Hopefully then, Merrick and I will have things cleared up and thoroughly explained to us for what is going to happen as well as what is going on.
**Prayer requests for this week: **
- Even more peace from our Heavenly Father to calm our anxiousness about this new drug. There are a lot of unknows with this...once again.
- Answers for the financial concerns for this new drug.
- That the Dr. visit will go well. Pray that he will be thorough with his answers. Pray that God will continue to give him wisdom in all that he does.
- Thanksgiving and praise that my white count and the rest of my blood numbers are on the rise and I am starting to feel some of my energy come back!
Thank you again for your prayers, support, and concern!!
While I was talking to the nurse about my blood levels, she very casually mentioned that the Dr. has ordered me to try another chemo drug and they are waiting to hear from our insurance whether or not it will be approved with our policy. While trying to keep my composer, I informed the nurse that nothing has been said or even hinted to the fact that I am switching to another drug. After a few akward "ohs and ums" and applogies she explained that the Dr. wants me to stop with the gleevic and begin trying sprycell (no idea if that is how you spell it or even say it...all I understood was something like that).
That evening, Merrick did a lot of research on this new drug. It has only been around since 2007 where the gleevic has been around for 10 years. However, the people that commented about the drug stated they began on the gleevic but their bodies could not adapt/ handle the side effects. Once they switched to this drug, they noticed a huge improvement. So that was very encouraging! However, the majority of the side effects are similar to the gleevic ones. I guess time will tell how my body reacts to this drug.
Throughout the rest of this week I have been on the phone and signing and faxing back forms to get the ball rolling to start this new drug. We have been warned that our copay for this new drug is almost double than the gleevic. :*( The foundation that helps with copays for gleevic and possibly this drug denied our claim because I am not on Medicare. :*( The patient advocate from Avera has been an absolute gem and is working very diligently on our case to help us find what we need for financial assistance with this drug. We are very thankful for her, her knowledge, and her connections! But at the same time, once again....Merrick and I are trying extremely hard to stay calm and trust the Lord that something will work out. Just right now things do not look as hopeful as we thought, financially.
This coming Monday I will not have to go in for blood work. On Tuesday, I will be going to the Dr. in Sioux Falls for a check up. I will have blood work done the first hour and then see the Dr. the second hour. Hopefully then, Merrick and I will have things cleared up and thoroughly explained to us for what is going to happen as well as what is going on.
**Prayer requests for this week: **
- Even more peace from our Heavenly Father to calm our anxiousness about this new drug. There are a lot of unknows with this...once again.
- Answers for the financial concerns for this new drug.
- That the Dr. visit will go well. Pray that he will be thorough with his answers. Pray that God will continue to give him wisdom in all that he does.
- Thanksgiving and praise that my white count and the rest of my blood numbers are on the rise and I am starting to feel some of my energy come back!
Thank you again for your prayers, support, and concern!!
Wednesday, August 8, 2012
Patience
Hi Everyone,
Now that we have been home for a few weeks and I need to keep my mind busy, I was able to clean up the office and find our computer under stacks of paper and bills. Since things are settling down, Merrick asked if I would be able to start blogging. At first I didn't want to because I don't know what to say. But after much consideration, I feel like I am ready to. So, the blogs will be from me, Tessa. :)
Last week my white blood count was down to 3,000 (normal range in 9,000-11,000) so I was able to be off of my chemo pill (gleevic). After my body got through the withdrawl stage, I started to feel somewhat normal again. I didn't have the constant joint pain, nausea, sleeplessness, etc. I was just extremely tired. So it felt like I was "on vacation" for the week.
This past Monday I had my blood tested again. My white blood count is at a whopping 3,100 again very low. Also my red blood count, hemoglobin, and blood platelets are continuing to drop even further; hence the extreme fatigue. Therefore, the Dr. has instructed me to continue to stay off of the gleevic for another week. So I guess my body gets to be "on vacation" for another week.
Even though I get to be off of gleevic and not have the nasty side effects, my mind is anxious and worried about restarting the gleevic. I was very sick when I started it and I am not looking forward to having go through that all again. I am also very anxious about all the unanswered questions from the Dr. I know where my blood levels are at and what the "normal range" should be and they aren't even close to that. But he has reassured us that those numbers are common and we will see where they are at next week.
For those of you who know me personally, I worry a lot about every day stuff and I get easily anxious...But since July 9, 2012 when my life was completely flipped upside down and shattered, I have felt an incredible amount of peace. I know that that kind of peace can only come from my Heavenly Father. My sister-in-law reminded me of a passage while I was in the hospital and it has been my daily reminder and God's voice speaking directly to me. "Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" (Philippians 4: 4-7). So with that verse as my constant reminder to stay calm, Merrick and I also try to find something to be thankful for each day. We have learned that if we don't, the feelings of anger, hatred and bitterness will quickly consume us. Some days are a lot easier than others. I would say that right now it would be easy... but what lies ahead of us will be anything but easy. Therefore, that is what we are thankful for for right now-I can feel like I was before all....."this" (that's the best word I can think of. There are plenty of others, but probably not the most proper :) )
*Prayer Requests for this week*
- My blood levels will begin to balance out
- My energy level will rise so I can keep up with our almost 2 year old daughter
- Continued peace from our Heavenly Father
- Patience......even though Merrick and I try to focus on the positives and being thankful, we feel like we are starting to loose grip because of all the unknowns. When we both feel like we are slipping, it puts a huge strain on our friendship and our marriage. But we know that we have to be strong for each other and our daughter. This is becoming extremely hard for both of us!
- Keep Satan away from our thoughts. He feeds on our weaknesses and right now Merrick and I are at our most vulnerable than we've ever been. It doesn't take much for him to get at us, and that scares me. I don't want him anywhere near my precious family!
Thank you for your love, support, and prayers. We can't even begin to explain how thankful we are to have so many people in our lives that care about us.
Now that we have been home for a few weeks and I need to keep my mind busy, I was able to clean up the office and find our computer under stacks of paper and bills. Since things are settling down, Merrick asked if I would be able to start blogging. At first I didn't want to because I don't know what to say. But after much consideration, I feel like I am ready to. So, the blogs will be from me, Tessa. :)
Last week my white blood count was down to 3,000 (normal range in 9,000-11,000) so I was able to be off of my chemo pill (gleevic). After my body got through the withdrawl stage, I started to feel somewhat normal again. I didn't have the constant joint pain, nausea, sleeplessness, etc. I was just extremely tired. So it felt like I was "on vacation" for the week.
This past Monday I had my blood tested again. My white blood count is at a whopping 3,100 again very low. Also my red blood count, hemoglobin, and blood platelets are continuing to drop even further; hence the extreme fatigue. Therefore, the Dr. has instructed me to continue to stay off of the gleevic for another week. So I guess my body gets to be "on vacation" for another week.
Even though I get to be off of gleevic and not have the nasty side effects, my mind is anxious and worried about restarting the gleevic. I was very sick when I started it and I am not looking forward to having go through that all again. I am also very anxious about all the unanswered questions from the Dr. I know where my blood levels are at and what the "normal range" should be and they aren't even close to that. But he has reassured us that those numbers are common and we will see where they are at next week.
For those of you who know me personally, I worry a lot about every day stuff and I get easily anxious...But since July 9, 2012 when my life was completely flipped upside down and shattered, I have felt an incredible amount of peace. I know that that kind of peace can only come from my Heavenly Father. My sister-in-law reminded me of a passage while I was in the hospital and it has been my daily reminder and God's voice speaking directly to me. "Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" (Philippians 4: 4-7). So with that verse as my constant reminder to stay calm, Merrick and I also try to find something to be thankful for each day. We have learned that if we don't, the feelings of anger, hatred and bitterness will quickly consume us. Some days are a lot easier than others. I would say that right now it would be easy... but what lies ahead of us will be anything but easy. Therefore, that is what we are thankful for for right now-I can feel like I was before all....."this" (that's the best word I can think of. There are plenty of others, but probably not the most proper :) )
*Prayer Requests for this week*
- My blood levels will begin to balance out
- My energy level will rise so I can keep up with our almost 2 year old daughter
- Continued peace from our Heavenly Father
- Patience......even though Merrick and I try to focus on the positives and being thankful, we feel like we are starting to loose grip because of all the unknowns. When we both feel like we are slipping, it puts a huge strain on our friendship and our marriage. But we know that we have to be strong for each other and our daughter. This is becoming extremely hard for both of us!
- Keep Satan away from our thoughts. He feeds on our weaknesses and right now Merrick and I are at our most vulnerable than we've ever been. It doesn't take much for him to get at us, and that scares me. I don't want him anywhere near my precious family!
Thank you for your love, support, and prayers. We can't even begin to explain how thankful we are to have so many people in our lives that care about us.
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