I am sorry that it has been awhile since I have updated the blog. Right now it feels like we are drowning in the ocean of life and we continue to get hit with one wave after the other. We are not able to catch our breath and swim to shore.
On September 11, we got hit with another wave of life shattering news. Merrick's mom, Lorna, was diagnosed with inflammatory breast cancer. On Mondy of this week we found out that her cancer has already spread to the bones. She had her first dose of chemo therapy yesterday. She will have chemo once every three weeks and then be rechecked to see how the cancer is responding to the chemo. This kind of cancer is rare and very agressive. But we have assured her that we serve an Almighty God who can do miracles and that her family and friends are with her every step of the way to remind her what she is fighting for!
As if that is not enough to try and deal with. I have been continuing on my Sprycel (chemo drug) and my numbers are decreasing and the side effects are increasing. Three weeks ago my white count was 116,000 then it was 22,000 and now this week it is down to 5,000. It is good that my white count came down but all my other numbers we staying in normal range except for this week. I noticed that all of them have also dropped so I am even more tired than usual and I caught Arianna's bad cold and it is taking me even longer to get over it because I do not have enough white blood cells to fight it off.
The side effects that are increasing is the joint and muscle pain, headache, hair loss, and there are changes in my vision that I have not noticed before. I am still trying to figure out when the best time to take the drug because now about 2 hours after I take it I become very nauseous and achy.
Not only are the physical side effects taking a toll on myself and Merrick but the emotional side effects are worse than ever. The Dr. keeps telling me I will have to find a new normal...well I am sorry to say that I do not like the "new normal." It quite frankly sucks! I am noticing that there are moments when I am paralyzed with fear that this is how it is going to be from now on or I will never be able to do that agian...or what if?? I do my best to shrug it off and pray for God to remove that thought from my head because I know that in a matter of seconds I will find myself stuck in a very dark, scary place that I do not want to be in.
However, on a much more positve note it is our precious baby girl's 2nd birthday tomorrow. I cannot believe she will be 2 already. When she was born she brought us so much joy and happiness, little did we know that that joy and happiness would carry us through the most difficult time in our lives! She is such a little cheerleader of me, Merrick, Lorna and the rest of our family. She has no idea the responsibility she has in distracting us and cheering us up. But I am so thankful she does not know what is going on. It is almost too much for adults to handle let alone a child. But I am even more thankful to God for giving us such precious little girl whom I am fighting my life for to be with!!
**Prayer Requests for this Week**
- Please pray for strength for Lorna for what she has to endure as well as a sense of peace that can only come from our heavenly Father.
- Please pray for her husband, Marlen. Pray for strength as he has to sit by and watch what his beloved has to endure. Also may he have a sense of peace from our heavenly Father.
- Please pray for Merrick. He has a lot to deal with- a demanding job, a family, and both his wife and mother are fighting a life threatening disease! May God uphold him and give him the strength he needs.
- Please pray that my numbers will balance out so we can figure out the right dosage of my chemo.
- Please pray that the side effects will diminish and not continue to get worse.
- Please pray to keep Satan away from our family. We are extremely susceptible to him right now and it is too easy to fall into his dark place where anger and bitterness is all you feel.
- Please pray for our families. We are dealing with so much that right now it feels unbearable. We need to feel God's presence as a sign that he is holding us and carrying us through each step of this unwanted journey.
Thank you again for all your prayers, cards, meals, donations, and words of encouragement! We cannot begin to describe how blessed we feel from a community of friends, family, and believers in Christ both near and far!
Friday, September 28, 2012
Friday, September 7, 2012
Here we go again
Since I have had the luxury of not being on my chemo pill a few weeks, I now realize how wonderful it was not to feel side effects.......or be constantly reminded that I have leukemia.
Merrick, Arianna, and I went to the Twin Cities last weekend to visit his family. We had such a blast! I made sure to enjoy some treats since I knew I would begin my chemo pill on Monday. Some of the treats were Star Bucks, LeeAnn Chin, cheesecake from the the Cheesecake Factory, and a pedicure. I have to honestly say that there were several times I thought I was "sick free." I would have flashes of thinking maybe it was all just a nightmare, and now I woke up. All that I went through really didn't happen and all that I need to brace myself for my future will never exist. I continued to push the paralyzing fear deeper within me so I could truly enjoy myself. But once Monday morning came around, everything resurfaced once again.
I started my new chemo pill, Sprycel. So far I seem to be ok in the morning. I try to get as much done as I can when I have my energy, including chasing and having fun with my almost two year old baby girl :) But once 2 o'clock rolls around, there is a whole different story. I start to get dizzy, nauseated, my knees and elbows are achy, and I over all just feel exhausted. I am pretty much worthless the rest of the day. As of right now, it feels the same as my previous drug but not as severe. However, my previous drug started out this way also and continued to get worse. I pray that that will not happen with this drug!
Not only are the physical side effects of this drug enough to deal with but the emotions I have been burrying deeper and deeper are resurfacing. The overwhelmingness of this diagnosis and how it effects every part of my life as well as my family's life is almost unbearable! Most of the time all I can pray is a whisper of help. I am so grateful that I serve a God who can hear me through the tears of pain and frustration. And He knows exactly what I need, even when I don't know what to ask for anymore. PRAISE GOD!
**Prayer Requests for This Week**
- Please pray that the side effects will be minimal and my body will adjust and tolerate this drug.
- Please pray for peace and the sense of God's presence among us. I know in my head He is here, I just need to feel His presence as well....especially now!
- Please pray that this new drug will work. I will start having my blood tested again next week. So we will see what my numbers are then.
Thank you for all of your love, prayers, and support!
Merrick, Arianna, and I went to the Twin Cities last weekend to visit his family. We had such a blast! I made sure to enjoy some treats since I knew I would begin my chemo pill on Monday. Some of the treats were Star Bucks, LeeAnn Chin, cheesecake from the the Cheesecake Factory, and a pedicure. I have to honestly say that there were several times I thought I was "sick free." I would have flashes of thinking maybe it was all just a nightmare, and now I woke up. All that I went through really didn't happen and all that I need to brace myself for my future will never exist. I continued to push the paralyzing fear deeper within me so I could truly enjoy myself. But once Monday morning came around, everything resurfaced once again.
I started my new chemo pill, Sprycel. So far I seem to be ok in the morning. I try to get as much done as I can when I have my energy, including chasing and having fun with my almost two year old baby girl :) But once 2 o'clock rolls around, there is a whole different story. I start to get dizzy, nauseated, my knees and elbows are achy, and I over all just feel exhausted. I am pretty much worthless the rest of the day. As of right now, it feels the same as my previous drug but not as severe. However, my previous drug started out this way also and continued to get worse. I pray that that will not happen with this drug!
Not only are the physical side effects of this drug enough to deal with but the emotions I have been burrying deeper and deeper are resurfacing. The overwhelmingness of this diagnosis and how it effects every part of my life as well as my family's life is almost unbearable! Most of the time all I can pray is a whisper of help. I am so grateful that I serve a God who can hear me through the tears of pain and frustration. And He knows exactly what I need, even when I don't know what to ask for anymore. PRAISE GOD!
**Prayer Requests for This Week**
- Please pray that the side effects will be minimal and my body will adjust and tolerate this drug.
- Please pray for peace and the sense of God's presence among us. I know in my head He is here, I just need to feel His presence as well....especially now!
- Please pray that this new drug will work. I will start having my blood tested again next week. So we will see what my numbers are then.
Thank you for all of your love, prayers, and support!
Thursday, August 23, 2012
The Dr. and the Troll
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!
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!
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.
Wednesday, July 25, 2012
The Blog Continues
We've had some family and friends reccommend to us to keep posting to the blog since the battle is not yet over. I guess I didn't realize people were still reading it so I apologize we haven't kept it up to date. I'll try to keep posting from now on.
I also had some mention that too much of the previous was very happy and hopeful and they wanted to know if that was all true.... they said to put what we are actually feeling so people know how to pray for us and how they can help.
Honestly, most days it takes all the energy I have to not break down. Tessa hasn't been feeling well since we came home from the hospital. Even though her white blood count is down to normal, her red blood count hasn't been picking up as quickly so she's been a little anemic and therefore really tired and worn.
On top of that, there are the medication side effects. Her knees and joints have been aching so much that it has been hard to walk. Headaches have been worsening as well with a general feeling a nasea and just plain crappy. Her nasea pills don't help with nasea, she can't take tylenol or ibprofen for pain because they could mask a fever which could take her since her immune system is compromised, and she reacts to any type of narcotic pain reliever which includes all the good ones like morphine, codine and we found out last night that she reacts to dilaudid, a supposedly safer morphine based drug.
I think the worst part is that there are no outward signs to any of this. So many people hear chemo pills and they think she'll lose her hair and look horrible. But she doesn't. The Chemo is such a low dose that her hair will stay... its just everything inside hurts. People are quick to say then "well thats not so bad then.. at least not as bad as you thought..." and its a struggle for both Tessa and I because we do feel very thankful for the leukemia being treatable so therefore we shouldn't complain.... it could be worse. But that takes away from the fact that there is still struggle and pain.
Another thing that sucks is still the unkown. The doctor said it could take anywhere from a year to 18 months until we get her body settled with the medication and at the right dosage. For the next while it will be a game of upping and lowering her medication so that it kills off just enough white blood cells but not too much. We were hopeful right away when we found out there was a pill.... now we are preparing ourselves to deal with some crappy side effects for a while. We just hope her body adjusts and she can feel somewhat normal again in time.
With discussing all of this with her doctor, they do say that these are more extreme side effects of the pill and we might have to discuss taking a different kind. However there are only 2 other kinds to try and with each step we lose footing with our tug-0-war for Tessa's health and life. The other two are also more experimental yet and have side effects of their own. For now then, we wait, see how things go and hopefully her body will adjust. We ask for prayers that her body will accept the medication and be able to handle it.
Last night was a reminder of all of this as we went to the pipestone ER. She spiked a fever of 101 so we had to go in so that they could test and see what was up. It was hard for me to be patient with the ER doctor as he was oblivious to the fact she had leukemia and that her immune system was compromised--even after we told him. After they told us they were going to send us home with some pain meds for her knees. They said she doesn't have an infection since her white blood count was normal.... DUH! She's taking pills that kill off her white blood cells, thats why we needed to come in. It was after explaining this the 3rd time he finally called the sioux falls oncology clinic where they ordered more tests and got her on an antibiotic right away.
I think it goes back to the fact that everything looks ok from the outside. They couldn't tell she had Leukemia and didn't understand her type of leukemia. She just looked like she was in pain.
I'm a manager of a farm/hardware retail store. I've been very thankful for my employees during this time. If it wasn't for them I'd probably go insane. Everyday at work my mind is all fuzz, I can't focus on anythign when I'm the one that usually gets everyone else focused to the tasks at hand. And then people ask how I'm doing..... I never realized until now how loaded of a question it is and how much people can't stand when you don't answer "good," or "ok". The worst is when people try and encourage you. I try and remember that at one point I did the same thing... I didn't understand.
I remember back to a past blog where I talked about joining a family of people somehow deeply touched by cancer or another illness... one that took much fight and the possibility of losing a loved one. I can tell who belongs to that family whether they ask me the question of "how are you doing"? or if they just come up with watery eyes and just give me a hug saying "i know" or "we will never know why but our prayers are with you.
I write all of this because I wish someone would have told me before when I was naive. Never ask someone "how are you?" when you know they are struggling with an illness or deep emotional pain. The best way to show your concern and love is physical affection of some sort... even just a squeeze of the hand or a half hug.... For some reason, physcial connection with another human being reminds the person they are not alone and that others love them and are thinking of them. Its one of the ways in which actions speak much larger than any words could say.
...................
So thats the update. We're gearing up for a long road of general crap and pain. But yet we're thankful every day that Tessa is here. This is the meaning of bittersweet, something that is hard to deal with but thankful your still dealing with it; the alternative is death..... And that too is always on my mind and worries me continually. painful thoughts of her not being here anymore......
...................
prayer requests:
that Tessa's body will accept the Gleevic and the pain and nasea will subside.
that we don't lose our faith in the road ahead as little things every day wear away at our spirits
most of all that Tessa can find some relief for the pain and be able to sleep, that will help alot
thank you everyone for the thoughts, prayers, and cards. At times like these it helps us so much to know how loved and cared for we are and that we belong so such a large family of friends and family of christian brothers and sister who are in constant prayer for us.
Merrick
I also had some mention that too much of the previous was very happy and hopeful and they wanted to know if that was all true.... they said to put what we are actually feeling so people know how to pray for us and how they can help.
Honestly, most days it takes all the energy I have to not break down. Tessa hasn't been feeling well since we came home from the hospital. Even though her white blood count is down to normal, her red blood count hasn't been picking up as quickly so she's been a little anemic and therefore really tired and worn.
On top of that, there are the medication side effects. Her knees and joints have been aching so much that it has been hard to walk. Headaches have been worsening as well with a general feeling a nasea and just plain crappy. Her nasea pills don't help with nasea, she can't take tylenol or ibprofen for pain because they could mask a fever which could take her since her immune system is compromised, and she reacts to any type of narcotic pain reliever which includes all the good ones like morphine, codine and we found out last night that she reacts to dilaudid, a supposedly safer morphine based drug.
I think the worst part is that there are no outward signs to any of this. So many people hear chemo pills and they think she'll lose her hair and look horrible. But she doesn't. The Chemo is such a low dose that her hair will stay... its just everything inside hurts. People are quick to say then "well thats not so bad then.. at least not as bad as you thought..." and its a struggle for both Tessa and I because we do feel very thankful for the leukemia being treatable so therefore we shouldn't complain.... it could be worse. But that takes away from the fact that there is still struggle and pain.
Another thing that sucks is still the unkown. The doctor said it could take anywhere from a year to 18 months until we get her body settled with the medication and at the right dosage. For the next while it will be a game of upping and lowering her medication so that it kills off just enough white blood cells but not too much. We were hopeful right away when we found out there was a pill.... now we are preparing ourselves to deal with some crappy side effects for a while. We just hope her body adjusts and she can feel somewhat normal again in time.
With discussing all of this with her doctor, they do say that these are more extreme side effects of the pill and we might have to discuss taking a different kind. However there are only 2 other kinds to try and with each step we lose footing with our tug-0-war for Tessa's health and life. The other two are also more experimental yet and have side effects of their own. For now then, we wait, see how things go and hopefully her body will adjust. We ask for prayers that her body will accept the medication and be able to handle it.
Last night was a reminder of all of this as we went to the pipestone ER. She spiked a fever of 101 so we had to go in so that they could test and see what was up. It was hard for me to be patient with the ER doctor as he was oblivious to the fact she had leukemia and that her immune system was compromised--even after we told him. After they told us they were going to send us home with some pain meds for her knees. They said she doesn't have an infection since her white blood count was normal.... DUH! She's taking pills that kill off her white blood cells, thats why we needed to come in. It was after explaining this the 3rd time he finally called the sioux falls oncology clinic where they ordered more tests and got her on an antibiotic right away.
I think it goes back to the fact that everything looks ok from the outside. They couldn't tell she had Leukemia and didn't understand her type of leukemia. She just looked like she was in pain.
I'm a manager of a farm/hardware retail store. I've been very thankful for my employees during this time. If it wasn't for them I'd probably go insane. Everyday at work my mind is all fuzz, I can't focus on anythign when I'm the one that usually gets everyone else focused to the tasks at hand. And then people ask how I'm doing..... I never realized until now how loaded of a question it is and how much people can't stand when you don't answer "good," or "ok". The worst is when people try and encourage you. I try and remember that at one point I did the same thing... I didn't understand.
I remember back to a past blog where I talked about joining a family of people somehow deeply touched by cancer or another illness... one that took much fight and the possibility of losing a loved one. I can tell who belongs to that family whether they ask me the question of "how are you doing"? or if they just come up with watery eyes and just give me a hug saying "i know" or "we will never know why but our prayers are with you.
I write all of this because I wish someone would have told me before when I was naive. Never ask someone "how are you?" when you know they are struggling with an illness or deep emotional pain. The best way to show your concern and love is physical affection of some sort... even just a squeeze of the hand or a half hug.... For some reason, physcial connection with another human being reminds the person they are not alone and that others love them and are thinking of them. Its one of the ways in which actions speak much larger than any words could say.
...................
So thats the update. We're gearing up for a long road of general crap and pain. But yet we're thankful every day that Tessa is here. This is the meaning of bittersweet, something that is hard to deal with but thankful your still dealing with it; the alternative is death..... And that too is always on my mind and worries me continually. painful thoughts of her not being here anymore......
...................
prayer requests:
that Tessa's body will accept the Gleevic and the pain and nasea will subside.
that we don't lose our faith in the road ahead as little things every day wear away at our spirits
most of all that Tessa can find some relief for the pain and be able to sleep, that will help alot
thank you everyone for the thoughts, prayers, and cards. At times like these it helps us so much to know how loved and cared for we are and that we belong so such a large family of friends and family of christian brothers and sister who are in constant prayer for us.
Merrick
Monday, July 16, 2012
Day 7: Heading Home!
I'm glad I was able to get my butt out of bed this morning on time. Doc was in right away at 7:35 this morning to check on her.
She'll get her neck blood cathedar out in just a bit, nice shower, and I'm taking her to cinnabon. (only thing she's craving this morning).
White blood count is down to 30,000, by the end of the day should be 20,000 and then tommorow 10,000. This week will be some trips to pipestone for blood tests to monitor her white blood cells. Then like I've put before, we'll just monitor everything the next few months until we get her dosage at the correct amount.
Then once we reach the 18 month mark, everyrthing should be clear.
She doesn't have any restrictions (which we're thankful for) and everything should be ok.
She wanted to let everyone know as well that she'll be at Gord and Judy's for the week until she gets some of her strength back to tackle Arianna on her own. Gord and Judy told me as well that their house is open to anyone who would want to come and visit so don't be afraid to come and say hi. She doesn't have to worry as much now about people who are sick.... we'll just make sure to sanitize your hands before you get too far in the door :)
Thank you again to all for the prayers and support. We now start the Journey at home for the next chapter of our lives. Tessa is here, Arianna is more precious than ever, and I have my family. Life couldn't be better.
This is the last post--yeah!
She'll get her neck blood cathedar out in just a bit, nice shower, and I'm taking her to cinnabon. (only thing she's craving this morning).
White blood count is down to 30,000, by the end of the day should be 20,000 and then tommorow 10,000. This week will be some trips to pipestone for blood tests to monitor her white blood cells. Then like I've put before, we'll just monitor everything the next few months until we get her dosage at the correct amount.
Then once we reach the 18 month mark, everyrthing should be clear.
She doesn't have any restrictions (which we're thankful for) and everything should be ok.
She wanted to let everyone know as well that she'll be at Gord and Judy's for the week until she gets some of her strength back to tackle Arianna on her own. Gord and Judy told me as well that their house is open to anyone who would want to come and visit so don't be afraid to come and say hi. She doesn't have to worry as much now about people who are sick.... we'll just make sure to sanitize your hands before you get too far in the door :)
Thank you again to all for the prayers and support. We now start the Journey at home for the next chapter of our lives. Tessa is here, Arianna is more precious than ever, and I have my family. Life couldn't be better.
This is the last post--yeah!
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