Hello All,
Just thought I would send out the latest update so you can pray specifically.
July 14th Ron camped out at MD Anderson from about 8 until 12:30. I tell people he went in with boxing gloves, taking no prisoners. He went back and forth from the first floor pharmacy to the second floor doctor’s office jumping all the hoops, dotting all the “I’s” and crossing all the “t’s”. Revlimid is a closely guarded drug and there are just a lot of procedures and regulations you have to go through for them to actually distribute the drug. But, my hero was once again successful, so we started the meds July 15th.
Ron is now an official drug dispenser as wellJ I take a steroid once a week, an aspirin and the Revlimid once a day for 21 days. Then I am off a week, and then start again. It is a 3 month regimen and then I get reassessed after that. The side effects were minimal until Sunday evening. I experienced shortness of breath, pain below my ribcage and a headache. I also have had no appetite, resulting in a 9 pound weight loss. (I am not complaining about that). So, since I was due for labs Monday morning (July 22) I let Dr. Hajdenberg’s office know of the side effects. The lab appointment was at 8:00 and Hajdenberg wanted to see me right afterwards. He sent me for a CT scan with contrast because he had to rule out any blood clots, which is one of the possible side effects from the Revlimid, which is also why I take the aspirin. So, instead of our appointment being from 8 - 8:30, we were there from 8 to 3. The CT scan came back clear, so Ron asked him to check my blood work. He came back and said everything was normal except for my calcium level which was elevated to an 11. Not greatly elevated, but he said that could be making me feel bad. He scheduled me for an IV of fluids and a medication to take care of the elevated calcium. So, Tuesday was spent at MD Anderson from 1 to 4 getting that. I feel incredibly better. No more pain in my chest, no more shortness of breath and only a slight headache.
This could happen again, and if it does, he will back me down to 12.5 mg of Revlimid instead of 25 mg to see if that helps. The numbness and tingling in my lower legs is worse, which also could be a side effect from the meds. That probably troubles me the most. So, please pray for that to get better. I don’t even want to think about going backwards in that area.
I get out of my brace next Friday, August 1st. YEAH!!! Another hurdle.
Thank you for all your prayers, they mean more to us than you can imagine.
Amy leaves to go back to Liberty in 13 days. Pray for everything to go smoothly. She has been such a great help, words cannot begin to express how her presence at home has helped. We will miss her, yet we know she is right where God wants her to be.
Thank you again,
Jenny Goins
Saturday, July 26, 2008
July 7, 2008
July 1st 2008
Well, here is the latest update.
We met with Dr. Hajdenburg on Friday and learned a lot about Revlimid. It is a chemo, but I don’t loose my hair. It is oral and I will be on it for 21 days, off for 7, on for 21 days and off for 7 and continue like that for 3 months. They also have me on a steroid and an aspirin every day because the Revlimid can cause blood clots (deep vein thrombosis). The steroid is only once a week. I should begin that regimen on July 14th. Side effects seem to be minimal; fatigue, diarrhea, and constipation. Hopefully, they really will be minimal. They will check my blood every week for eight weeks to make sure the white blood cells and red blood cells are the right amount. (CBC) Then we will go to once a month. Further down the road, he plans to send me to Moffitt in Tampa. He wants to see about taking my own stem cells and “banking” them for more aggressive treatment later, should I need it. As explained to us, I have stage I multiple myeloma. Stage I begins at 10% and goes to 30% of my bone marrow involvement. I was at 11% when they did the bone marrow biopsy in the hospital so I am barely at stage I. Good news for me. Thank you God. People that are at 50% usually begin an aggressive chemo treatment and also work with the stem cell treatments. With this cancer, the more cancer cells that are removed/eliminated the better. That is not always the case with every cancer…..so we learned. I will also have scans taken every 2-3 months.
I am walking around the house without the walker or anything. So, my balance is getting better, but not the sensation. I can’t really tell any difference in that so please pray that it will come back soon. I get my brace off August 1st.
Dr. Hajdenburg also cleared me for the pool. So, Saturday I was in the pool for 2 ½ hours. Yeah, I overdid it, so Sunday it was only an hour and a half. I practiced kicking which is really exhausting, so, I do it as much as I can. I wear the brace they sent me home with for the shower, so I am still able to follow Dr. Burry’s instructions for wearing a brace when I am ambulatory.
I was able to get into a physical therapy facility on Slighe Blvd. that is a self pay not associated with the hospital. My therapist is Teresa and I see her once a month, typically on a Thursday. She gave me several exercises to do in the pool which I really enjoy. I work out on the Wii Fit for about 25 minutes a day and then do my floor (bed) exercises which I have now added ankle weights to (per Teresa), when I don’t do the exercises in the pool.
Ron and I are working on putting things on Ebay for school and I am also starting up my scrapbooking again. It is good for me to have a plan for the day and to feel productive so that I am actually accomplishing something.
I expect a lot from myself and forget that I am not only battling cancer, but recovery from back surgery and paralysis. So, keep Ron and I on the top of your prayer list. Ron has a lot on his plate just being my rock, let alone a father, bread winner, head of household and all the responsibilities he has running sound at the church, and keeping up with all the insurance issues. My prayer request would be to walk in untroubled trust that God has my best interest in mind, and His kingdom to expand. That I would rest knowing He is in control and I will make it through and be used by Him to glorify His name. Simply reading about multiple myeloma can be terrifying because your mortality smacks you in the face. This new “language” we are speaking is unwanted and also terrifying, yet God’s peace is there, waiting to be grasped. I was reading in Exodus, when Moses was called by God to Mt. Sinai to get all the instructions for the Israelites. The mountain shook, there was thunder and darkness……and God spoke out of the darkness. He spoke out of the darkness………therefore He was IN the darkness. That gave me such comfort, knowing He is in the darkness, MY darkness, still in control, still in charge, still His plan, not surprised.
We thank you for praying. Never stop.
Love,
Ron and Jenny
Well, here is the latest update.
We met with Dr. Hajdenburg on Friday and learned a lot about Revlimid. It is a chemo, but I don’t loose my hair. It is oral and I will be on it for 21 days, off for 7, on for 21 days and off for 7 and continue like that for 3 months. They also have me on a steroid and an aspirin every day because the Revlimid can cause blood clots (deep vein thrombosis). The steroid is only once a week. I should begin that regimen on July 14th. Side effects seem to be minimal; fatigue, diarrhea, and constipation. Hopefully, they really will be minimal. They will check my blood every week for eight weeks to make sure the white blood cells and red blood cells are the right amount. (CBC) Then we will go to once a month. Further down the road, he plans to send me to Moffitt in Tampa. He wants to see about taking my own stem cells and “banking” them for more aggressive treatment later, should I need it. As explained to us, I have stage I multiple myeloma. Stage I begins at 10% and goes to 30% of my bone marrow involvement. I was at 11% when they did the bone marrow biopsy in the hospital so I am barely at stage I. Good news for me. Thank you God. People that are at 50% usually begin an aggressive chemo treatment and also work with the stem cell treatments. With this cancer, the more cancer cells that are removed/eliminated the better. That is not always the case with every cancer…..so we learned. I will also have scans taken every 2-3 months.
I am walking around the house without the walker or anything. So, my balance is getting better, but not the sensation. I can’t really tell any difference in that so please pray that it will come back soon. I get my brace off August 1st.
Dr. Hajdenburg also cleared me for the pool. So, Saturday I was in the pool for 2 ½ hours. Yeah, I overdid it, so Sunday it was only an hour and a half. I practiced kicking which is really exhausting, so, I do it as much as I can. I wear the brace they sent me home with for the shower, so I am still able to follow Dr. Burry’s instructions for wearing a brace when I am ambulatory.
I was able to get into a physical therapy facility on Slighe Blvd. that is a self pay not associated with the hospital. My therapist is Teresa and I see her once a month, typically on a Thursday. She gave me several exercises to do in the pool which I really enjoy. I work out on the Wii Fit for about 25 minutes a day and then do my floor (bed) exercises which I have now added ankle weights to (per Teresa), when I don’t do the exercises in the pool.
Ron and I are working on putting things on Ebay for school and I am also starting up my scrapbooking again. It is good for me to have a plan for the day and to feel productive so that I am actually accomplishing something.
I expect a lot from myself and forget that I am not only battling cancer, but recovery from back surgery and paralysis. So, keep Ron and I on the top of your prayer list. Ron has a lot on his plate just being my rock, let alone a father, bread winner, head of household and all the responsibilities he has running sound at the church, and keeping up with all the insurance issues. My prayer request would be to walk in untroubled trust that God has my best interest in mind, and His kingdom to expand. That I would rest knowing He is in control and I will make it through and be used by Him to glorify His name. Simply reading about multiple myeloma can be terrifying because your mortality smacks you in the face. This new “language” we are speaking is unwanted and also terrifying, yet God’s peace is there, waiting to be grasped. I was reading in Exodus, when Moses was called by God to Mt. Sinai to get all the instructions for the Israelites. The mountain shook, there was thunder and darkness……and God spoke out of the darkness. He spoke out of the darkness………therefore He was IN the darkness. That gave me such comfort, knowing He is in the darkness, MY darkness, still in control, still in charge, still His plan, not surprised.
We thank you for praying. Never stop.
Love,
Ron and Jenny
June 18, 2008
Today marks 48 days since the surgery; not that any one is counting. Only 2 more radiation treatments to go, then on to the hematologist on the 27th.
Radiation has been pretty uneventful. I only started to experience nausea on Monday so I have been trying to eat several small meals so my stomach never gets totally empty. That seems to help for now; just keep praying that it will continue to get me through Friday.
I went to Physical Therapy today and Rod put the tuning fork on…….and yes, I felt a slight vibration in my lower extremities. It was slight, but I DID feel it which greatly encouraged me. I know my balance is coming along because I have been walking around the kitchen without the walker and going several steps without it. Rod had me walking around the rehab with canes that were very tall so I wouldn’t be leaning over, then we graduated to one tall cane and that was challenging, but very do-able. While I was there, who do you think came around the corner but Michael, the OT at the hospital that was the first one to get me up out of the hospital bed. He was surprised to see me as well and was also encouraged to see my progress. He was able to give Rod a bit more history regarding my case and his first visit to me in the hospital. My memory was not quite up to par back then. Rod wants me to get a pair of crutches to practice with, so we will see what we can find.
My left leg continues to be weaker than my right and my gait definitely shows it. I have to concentrate a great deal to make sure my left leg walks “heel-to-toe” and not jerk. My toes still tingle and feel asleep as do my calves, but I am confidant God is still healing completely. I keep reminding myself that it is 47 days; only 47 days since being told I would probably never walk again.
I am also still doing the Wii Fit every day and advancing to better levels in the balancing games.
As a final note, in my Bible study that I had been teaching since January, I had marked the verses in Hebrews 12: 12,13 which say, “Therefore, strengthen your feeble arms and weak knees. Make level paths for your feet, so that the lame may not be disabled, but rather healed.” I had no idea how those verses would impact me. I marked them in January, but didn’t really study them until last week. I was experiencing back pain that just kept increasing and those verses really stood out to me and I prayed them often in January. But, when I became paralyzed on April 30th, that word “disabled” really took on a different meaning for me. The whole chapter speaks about enduring hardship, God disciplining us for our good, us not growing weary and losing heart but fixing our eyes on Jesus, the author and perfecter of our faith who endured much more than I ever will. God’s timing is always perfect, is it not? Why was I doing a study in Hebrews, and not get to that chapter in depth until now? Why that word disabled? And healed? And especially weak knees. It makes God even more real as I realize every day He really does care about me, with all the billions of people in this world.
Keep praying!!
Jenny
Radiation has been pretty uneventful. I only started to experience nausea on Monday so I have been trying to eat several small meals so my stomach never gets totally empty. That seems to help for now; just keep praying that it will continue to get me through Friday.
I went to Physical Therapy today and Rod put the tuning fork on…….and yes, I felt a slight vibration in my lower extremities. It was slight, but I DID feel it which greatly encouraged me. I know my balance is coming along because I have been walking around the kitchen without the walker and going several steps without it. Rod had me walking around the rehab with canes that were very tall so I wouldn’t be leaning over, then we graduated to one tall cane and that was challenging, but very do-able. While I was there, who do you think came around the corner but Michael, the OT at the hospital that was the first one to get me up out of the hospital bed. He was surprised to see me as well and was also encouraged to see my progress. He was able to give Rod a bit more history regarding my case and his first visit to me in the hospital. My memory was not quite up to par back then. Rod wants me to get a pair of crutches to practice with, so we will see what we can find.
My left leg continues to be weaker than my right and my gait definitely shows it. I have to concentrate a great deal to make sure my left leg walks “heel-to-toe” and not jerk. My toes still tingle and feel asleep as do my calves, but I am confidant God is still healing completely. I keep reminding myself that it is 47 days; only 47 days since being told I would probably never walk again.
I am also still doing the Wii Fit every day and advancing to better levels in the balancing games.
As a final note, in my Bible study that I had been teaching since January, I had marked the verses in Hebrews 12: 12,13 which say, “Therefore, strengthen your feeble arms and weak knees. Make level paths for your feet, so that the lame may not be disabled, but rather healed.” I had no idea how those verses would impact me. I marked them in January, but didn’t really study them until last week. I was experiencing back pain that just kept increasing and those verses really stood out to me and I prayed them often in January. But, when I became paralyzed on April 30th, that word “disabled” really took on a different meaning for me. The whole chapter speaks about enduring hardship, God disciplining us for our good, us not growing weary and losing heart but fixing our eyes on Jesus, the author and perfecter of our faith who endured much more than I ever will. God’s timing is always perfect, is it not? Why was I doing a study in Hebrews, and not get to that chapter in depth until now? Why that word disabled? And healed? And especially weak knees. It makes God even more real as I realize every day He really does care about me, with all the billions of people in this world.
Keep praying!!
Jenny
June 4, 2008
Hello All our Prayer Warriors,
This is going to be a lengthy update, so, men bear with me, women…..indulge yourselves. J
We began with radiation at 7:40 and then met with Dr. Manon, our radiologist. I learned something new. The plasmacytoma on my spine, is very radiation sensitive, i.e., radiation reduces it significantly because the tumor can’t stand up to the radiation. Good news.
Then we went to Dr. Matthew Bury, our neurosurgeon. This was probably our most informative, humorous meeting of the day. He came in and was still in awe that I had walked into his office on my own accord. No wheelchair. He told us, “You have to understand, this is not what I usually see after your type of surgery. I have done two surgeries, just like yours, since then, and they have not had as good an outcome as you have had. You are lucky.” I told him luck had nothing to do with it, it was God. He just looked at me and shook his head, still not believing what he was seeing. He also asked us if he was…..gruff, when he visited us in the hospital. I told him he was, but that I would take his skill any day over that. He said, “I know, but I really need to work on that. Can you tell me what I said, or what I did that made me come off that way because I really don’t mean to be that way. My nickname in Med school was Eeor”. (remember we called him Dr. Dark, the name Mike Thomas gave him) We had a good laugh and he proceeded to share more.
He explained that when he came into the ER and reviewed my case that night, he had to make a decision to either operate right away, or wait until the morning. (My chances for walking again had he waited would have been 0) He said, “I told myself, this is a young woman who just presented a few hours ago with paralysis and maybe I can help her”. So, he said he just couldn’t live with himself if he could have made a difference, but didn’t at least try. So, he operated and said we definitely had time on our side.
He also explained that the “Hardware” I had in my thoracic spine should not prohibit movement. The cervical and lumbar are really where all your movement comes from”. So, that really made me feel better. He also said he expected my imbalance to improve and for the stiffness I feel in my back to go away. So, truthfully, I had not heard that before, and to hear it from HIM, really encouraged us. He also said I could sit up and put the brace on, so now I can relax in bed without the brace on and I can sit in the recliner without it. Again, good news.
Ron and I had breakfast at Brian’s Restaurant on Orange (my first restaurant since surgery) and then we went to Physical Therapy (PT). Brenda, instead of Rod, was my therapist and we began to evaluate my progress. It was very encouraging to actually SEE the progress on the machine that tells you exactly WHERE your imbalance is. I had improved, but still needed improving. So, then we went to the exercise table and she added some strengthening exercises for my core, since I can now remove my brace while sitting up. Then we went to the parallel bars and she had me stand with my feet touching each other, arms crossed over my chest and eyes closed; an exercise I have been practicing at home. I passed with flying colors. In other words, too easy…let’s make it harder. So, now I stand on a pillow, which serves as an unstable surface, with my feet together, arms crossed and eyes closed. Ron or the girls stand with me to make sure I am safe. Unless it’s Ron, I feel safe. Ron is too much of a jokester and taps my arm when I am not falling just to make me laugh. I know all you men are dying laughing and the women, most of you, are saying, “Oh, that is mean!” Ah, laughter is good medicine and Ron is an expert at making me laugh. This exercise was very difficult when I began doing it. I am also continuing on the WII. I have added the soccer “Balance” game and I am a horrible player on that. But, this is my first day. It is so good to get different exercises. It cuts down on the boredom. So, again, good news.
Now you should all feel caught up and know how to pray specifically. We hope to share Christ with Dr. Bury again. His treatment of me and my case will cause him to reevaluate how he decides to operate, maybe when and why and how quickly. Only our Father knows where all this will lead, but we are confident that He is in Control and has a perfect plan. Pray for my patience with my progress. I was reminded at each appointment, of how far we have come and what COULD have been, but because of God’s wonderful mercy and love, was NOT my outcome.
I’ve had three radiation treatments and have had no reaction. However, it IS early. Keep praying for this phase. We go every morning at 7:40 and are done in about 10 minutes. We have 12 more to go.
Ron and I thank you for praying, it takes time and commitment on your part, and we are the better for it.
Blessed to serve Him,
Jenny
This is going to be a lengthy update, so, men bear with me, women…..indulge yourselves. J
We began with radiation at 7:40 and then met with Dr. Manon, our radiologist. I learned something new. The plasmacytoma on my spine, is very radiation sensitive, i.e., radiation reduces it significantly because the tumor can’t stand up to the radiation. Good news.
Then we went to Dr. Matthew Bury, our neurosurgeon. This was probably our most informative, humorous meeting of the day. He came in and was still in awe that I had walked into his office on my own accord. No wheelchair. He told us, “You have to understand, this is not what I usually see after your type of surgery. I have done two surgeries, just like yours, since then, and they have not had as good an outcome as you have had. You are lucky.” I told him luck had nothing to do with it, it was God. He just looked at me and shook his head, still not believing what he was seeing. He also asked us if he was…..gruff, when he visited us in the hospital. I told him he was, but that I would take his skill any day over that. He said, “I know, but I really need to work on that. Can you tell me what I said, or what I did that made me come off that way because I really don’t mean to be that way. My nickname in Med school was Eeor”. (remember we called him Dr. Dark, the name Mike Thomas gave him) We had a good laugh and he proceeded to share more.
He explained that when he came into the ER and reviewed my case that night, he had to make a decision to either operate right away, or wait until the morning. (My chances for walking again had he waited would have been 0) He said, “I told myself, this is a young woman who just presented a few hours ago with paralysis and maybe I can help her”. So, he said he just couldn’t live with himself if he could have made a difference, but didn’t at least try. So, he operated and said we definitely had time on our side.
He also explained that the “Hardware” I had in my thoracic spine should not prohibit movement. The cervical and lumbar are really where all your movement comes from”. So, that really made me feel better. He also said he expected my imbalance to improve and for the stiffness I feel in my back to go away. So, truthfully, I had not heard that before, and to hear it from HIM, really encouraged us. He also said I could sit up and put the brace on, so now I can relax in bed without the brace on and I can sit in the recliner without it. Again, good news.
Ron and I had breakfast at Brian’s Restaurant on Orange (my first restaurant since surgery) and then we went to Physical Therapy (PT). Brenda, instead of Rod, was my therapist and we began to evaluate my progress. It was very encouraging to actually SEE the progress on the machine that tells you exactly WHERE your imbalance is. I had improved, but still needed improving. So, then we went to the exercise table and she added some strengthening exercises for my core, since I can now remove my brace while sitting up. Then we went to the parallel bars and she had me stand with my feet touching each other, arms crossed over my chest and eyes closed; an exercise I have been practicing at home. I passed with flying colors. In other words, too easy…let’s make it harder. So, now I stand on a pillow, which serves as an unstable surface, with my feet together, arms crossed and eyes closed. Ron or the girls stand with me to make sure I am safe. Unless it’s Ron, I feel safe. Ron is too much of a jokester and taps my arm when I am not falling just to make me laugh. I know all you men are dying laughing and the women, most of you, are saying, “Oh, that is mean!” Ah, laughter is good medicine and Ron is an expert at making me laugh. This exercise was very difficult when I began doing it. I am also continuing on the WII. I have added the soccer “Balance” game and I am a horrible player on that. But, this is my first day. It is so good to get different exercises. It cuts down on the boredom. So, again, good news.
Now you should all feel caught up and know how to pray specifically. We hope to share Christ with Dr. Bury again. His treatment of me and my case will cause him to reevaluate how he decides to operate, maybe when and why and how quickly. Only our Father knows where all this will lead, but we are confident that He is in Control and has a perfect plan. Pray for my patience with my progress. I was reminded at each appointment, of how far we have come and what COULD have been, but because of God’s wonderful mercy and love, was NOT my outcome.
I’ve had three radiation treatments and have had no reaction. However, it IS early. Keep praying for this phase. We go every morning at 7:40 and are done in about 10 minutes. We have 12 more to go.
Ron and I thank you for praying, it takes time and commitment on your part, and we are the better for it.
Blessed to serve Him,
Jenny
June 1, 2008
Hello All,
Sorry it has been a while since our last update, but here it is, so far!
I begin radiation tomorrow, Monday, June 2nd, at 11:30. The rest of the 14 days will be at 7:40 a.m. and only last 10 minutes. Please be in prayer for the technicians and Dr. Manon as they treat me. Interestingly, they are doing the radiation from the front. I have big black crosses right below my sternum and on my sides. I don't begin the pill, Revlamid, until the end of June.
When we went to our educational meeting for radiation on Wednesday, we started out with a nurse named Diane. Five minutes into the meeting, I was called back to the "mapping" room because of scheduling issues. When we got back, Diane was busy and Helen was our nurse. I recognized Helen, but I couldn't remember from where. I asked her if she took Precept Bible studies and she said yes. I thought I remembered seeing her at a training session in Mt. Dora. From there, we had a great conversation and then finished our education. At the end, she was able to pray with us and asked God to be beside, in back and above me and Ron as we travel this leg of the journey. God has His servants everywhere, doesn't He?
May I ask that you pray for Ron, that God would keep him healthy, patient and strong as he deals with all of this. He is husband, father, friend, encourager, maid, nurse and technician just to name a few. He puts on my brace in the morning as well as my Lanicain strips on my back...gets my breakfast and makes sure I am set for the day before he leaves for work. These next three weeks he will be doing all of that after he takes me to radiation. I can't take a shower without him there to make sure I am safe. He dries me off and then takes the pain strips off.....if I need to go in the middle of the night, he has to get my brace and help me put it on and then take it off. He is such a gift from God to me. He needs prayer just as much as I do.
For those who do not know: if I am up above 30 degrees, my brace has to be on. This means I have to get dressed lying down on the bed. I walk with a walker because as the physical therapist says, "It is like fingers to the floor" and it keeps me balanced. I have been practicing walking with it picked up for a few steps to try to get my balance back, but only for a few steps. I also exercise with the Wii Fit for 30 minutes, twice a day, doing the balance exercises as well as the exercises from the physical therapist twice a day.
Mama and Daddy came over yesterday and caught me in the kitchen making pumpkin muffins. I was pretty proud of myself! I even made Daniel and I tunafish sandwiches for lunch on Friday!! Big accomplishments for me I must say. God is good!!
Feel free to email and let me know if I've left anything out that I was supposed to update you on.
We see the neurosurgeon on Tuesday at 8:30 so we will let you know if anything new comes from that.
Keep praying!!! I'm still waiting for those vibrations, confident that God heals completely.
Love,
Ron and Jenny
Sorry it has been a while since our last update, but here it is, so far!
I begin radiation tomorrow, Monday, June 2nd, at 11:30. The rest of the 14 days will be at 7:40 a.m. and only last 10 minutes. Please be in prayer for the technicians and Dr. Manon as they treat me. Interestingly, they are doing the radiation from the front. I have big black crosses right below my sternum and on my sides. I don't begin the pill, Revlamid, until the end of June.
When we went to our educational meeting for radiation on Wednesday, we started out with a nurse named Diane. Five minutes into the meeting, I was called back to the "mapping" room because of scheduling issues. When we got back, Diane was busy and Helen was our nurse. I recognized Helen, but I couldn't remember from where. I asked her if she took Precept Bible studies and she said yes. I thought I remembered seeing her at a training session in Mt. Dora. From there, we had a great conversation and then finished our education. At the end, she was able to pray with us and asked God to be beside, in back and above me and Ron as we travel this leg of the journey. God has His servants everywhere, doesn't He?
May I ask that you pray for Ron, that God would keep him healthy, patient and strong as he deals with all of this. He is husband, father, friend, encourager, maid, nurse and technician just to name a few. He puts on my brace in the morning as well as my Lanicain strips on my back...gets my breakfast and makes sure I am set for the day before he leaves for work. These next three weeks he will be doing all of that after he takes me to radiation. I can't take a shower without him there to make sure I am safe. He dries me off and then takes the pain strips off.....if I need to go in the middle of the night, he has to get my brace and help me put it on and then take it off. He is such a gift from God to me. He needs prayer just as much as I do.
For those who do not know: if I am up above 30 degrees, my brace has to be on. This means I have to get dressed lying down on the bed. I walk with a walker because as the physical therapist says, "It is like fingers to the floor" and it keeps me balanced. I have been practicing walking with it picked up for a few steps to try to get my balance back, but only for a few steps. I also exercise with the Wii Fit for 30 minutes, twice a day, doing the balance exercises as well as the exercises from the physical therapist twice a day.
Mama and Daddy came over yesterday and caught me in the kitchen making pumpkin muffins. I was pretty proud of myself! I even made Daniel and I tunafish sandwiches for lunch on Friday!! Big accomplishments for me I must say. God is good!!
Feel free to email and let me know if I've left anything out that I was supposed to update you on.
We see the neurosurgeon on Tuesday at 8:30 so we will let you know if anything new comes from that.
Keep praying!!! I'm still waiting for those vibrations, confident that God heals completely.
Love,
Ron and Jenny
May 20, 2008
Jenny had her 1st Physical Therapy today. It was informative and insightful. She has real good strength in her legs and has improved a lot since she came home last week.
One of the tests checked her legs for feeling, hot, cold, and so on. That test was fine. Then they tested her feeling vibrations with a tuning fork. At this time, she did not have feeling for vibrations between her knees and her ankles. They mentioned that this is where a lot of your balance comes from and that will be the big focus over the next few weeks. She has been given exercises to help bring those sensory pathways back and/or allow her body to make new paths. The therapist did say that there are ways to compensate for that, but I don’t think we want to compensate after all that she has been through!!!
For the ones that have walked with Jenny over the past 8 months with her constant pain in her lower back, you should know that the only pain that she has now is from the incision. She has not had any lower back pain since the surgery. J
I caught her in the kitchen today showing Anna how to make bread and bake a cake for Katherine’s 17th birthday, so things are slowly progressing back to normal.
We meet with the Radiation Doctor on Thursday at M.D. Anderson and next week with her hematologist.
So, Jenny says to pray specifically for the “vibration” feeling to return to her legs and for her to gain the balance needed to get rid of the walker.
Her surgeon told her that she could ride in the car now, so I think the first place she will want to go is to church on Sunday. Hope to see ya there!!!
Ron
One of the tests checked her legs for feeling, hot, cold, and so on. That test was fine. Then they tested her feeling vibrations with a tuning fork. At this time, she did not have feeling for vibrations between her knees and her ankles. They mentioned that this is where a lot of your balance comes from and that will be the big focus over the next few weeks. She has been given exercises to help bring those sensory pathways back and/or allow her body to make new paths. The therapist did say that there are ways to compensate for that, but I don’t think we want to compensate after all that she has been through!!!
For the ones that have walked with Jenny over the past 8 months with her constant pain in her lower back, you should know that the only pain that she has now is from the incision. She has not had any lower back pain since the surgery. J
I caught her in the kitchen today showing Anna how to make bread and bake a cake for Katherine’s 17th birthday, so things are slowly progressing back to normal.
We meet with the Radiation Doctor on Thursday at M.D. Anderson and next week with her hematologist.
So, Jenny says to pray specifically for the “vibration” feeling to return to her legs and for her to gain the balance needed to get rid of the walker.
Her surgeon told her that she could ride in the car now, so I think the first place she will want to go is to church on Sunday. Hope to see ya there!!!
Ron
May 14, 2008
Jenny has learned that she will be going home today, (Wednesday)! She will be an out patient for the next few weeks for therapy at the Lucerne Medical Plaza on Gore (right across from the hospital).
She also starts the radiation process in the next week or so to remove the remaining 15% of the tumor. It will be for 3 weeks, 15 minutes a day. We do not know when she will start taking the “pill” Revlimid, but probably start within the next few weeks.
Jenny says “thank you” for all of the cards, visits, and most of all prayers, over the last 2 weeks. It has been simply amazing!! She also says to keep the emails coming.
I will send another update soon.
Ron
She also starts the radiation process in the next week or so to remove the remaining 15% of the tumor. It will be for 3 weeks, 15 minutes a day. We do not know when she will start taking the “pill” Revlimid, but probably start within the next few weeks.
Jenny says “thank you” for all of the cards, visits, and most of all prayers, over the last 2 weeks. It has been simply amazing!! She also says to keep the emails coming.
I will send another update soon.
Ron
May 9, 2008
The result came back this morning. It is Stage 1 Multiple Myeloma. Jenny is doing fine with this information and is even more ready to attack it.
Pray for her strength and her stamina to fight this invader of her body.
Now for the details:
The doctor said that she be given a new oral (pill) drug called Revlimid, it is a new drug that is showing great promise in fighting this cancer. He also said because she is so young it will work even better and it is very tolerable with very few side effects. I found this statement about the drug on the web site that is really upbeat:
These immunomodulatory derivatives are chemically similar to thalidomide but are more potent in the laboratory and have a different side effect profile than thalidomide. They have multiple mechanisms of action that affect both the cancer cell and its microenvironment.
Another neat thing that he said is that they are not done testing her marrow. They are trying to isolate the gene that is the actual problem so that they might be able to treat it.
She will be undergoing radiation for the remainder of the tumor in a couple of weeks. He said that it will begin in a few days and last for 3 weeks for 15 minutes a day.
She will probably be going home at the end of next week; she has a steroid that she has to take and that will be by an I.V.
I can’t tell you how much Jenny & I appreciate all of the support that we have received. It is really showing how Christ’s body has different parts and how the different parts have different functions.
Continue to pray for Jenny. She is very strong and will fight this very aggressively!
I will update you as we learn more.
Ron
Pray for her strength and her stamina to fight this invader of her body.
Now for the details:
The doctor said that she be given a new oral (pill) drug called Revlimid, it is a new drug that is showing great promise in fighting this cancer. He also said because she is so young it will work even better and it is very tolerable with very few side effects. I found this statement about the drug on the web site that is really upbeat:
These immunomodulatory derivatives are chemically similar to thalidomide but are more potent in the laboratory and have a different side effect profile than thalidomide. They have multiple mechanisms of action that affect both the cancer cell and its microenvironment.
Another neat thing that he said is that they are not done testing her marrow. They are trying to isolate the gene that is the actual problem so that they might be able to treat it.
She will be undergoing radiation for the remainder of the tumor in a couple of weeks. He said that it will begin in a few days and last for 3 weeks for 15 minutes a day.
She will probably be going home at the end of next week; she has a steroid that she has to take and that will be by an I.V.
I can’t tell you how much Jenny & I appreciate all of the support that we have received. It is really showing how Christ’s body has different parts and how the different parts have different functions.
Continue to pray for Jenny. She is very strong and will fight this very aggressively!
I will update you as we learn more.
Ron
May 8, 2008
So, still no bone biopsy results today. I guess they lost her in the move to LucerneJ
Jenny was evaluated by the docs today and she was given the hope of around 7 days to go home, so we will probably take her home by next weekend.
She was moved from room 419 to 404 tonight, so make note if you want to visit. Also, after 7:00 p.m., park in the very front of the hospital (Orange Ave) because they lock the west building.
Thanks for all of your support & prayers this last week. It has made Jenny’s recovery so much faster!
Ron & Jenny
Jenny was evaluated by the docs today and she was given the hope of around 7 days to go home, so we will probably take her home by next weekend.
She was moved from room 419 to 404 tonight, so make note if you want to visit. Also, after 7:00 p.m., park in the very front of the hospital (Orange Ave) because they lock the west building.
Thanks for all of your support & prayers this last week. It has made Jenny’s recovery so much faster!
Ron & Jenny
May 7, 2008
I know that everyone has been waiting for a new update on Jenny and I have been hoping to include the Bone Marrow Biopsy results in the update, but unfortunately we did not get the results tonight. As soon as I get the results I will send it, in the meantime Jenny says, “Don’t stop” praying for a good test result, God is in control.
The last couple of days have been fast moving. Jenny has gone from walking very slowly with the walker to actually walking one foot in front of the other with the walker. This has the every one of the therapists very excited!
Then came the news this afternoon @ 4:00 that she could be released from the hospital and be sent to ORMC Lucerne for intensive physical therapy. She was relieved that she was a candidate for this because the thought of going home first and having home therapy kind of made her uneasy. She knows that the 3 hour a day therapy can bring her the confidence that she might be lacking. At this moment, it looks like at least 7 days worth.
She is at Lucerne Hospital at the corner of Gore ave and Orange ave. She is in the West part of the hospital in the rehab unit, 2nd floor, room 419.
Visitors are welcome, but there might be time in the day where she is in therapy so be flexible with your time. She is gaining her strength and wants to see you so stop by if you are able.
I will send you and update on the results soon.
Ron
The last couple of days have been fast moving. Jenny has gone from walking very slowly with the walker to actually walking one foot in front of the other with the walker. This has the every one of the therapists very excited!
Then came the news this afternoon @ 4:00 that she could be released from the hospital and be sent to ORMC Lucerne for intensive physical therapy. She was relieved that she was a candidate for this because the thought of going home first and having home therapy kind of made her uneasy. She knows that the 3 hour a day therapy can bring her the confidence that she might be lacking. At this moment, it looks like at least 7 days worth.
She is at Lucerne Hospital at the corner of Gore ave and Orange ave. She is in the West part of the hospital in the rehab unit, 2nd floor, room 419.
Visitors are welcome, but there might be time in the day where she is in therapy so be flexible with your time. She is gaining her strength and wants to see you so stop by if you are able.
I will send you and update on the results soon.
Ron
May 5, 2008
Jenny had her bone marrow biopsy this morning. We have always heard how painful that procedure is, but Jenny said it just felt like a bee sting for about 30 seconds. Now we wait for up to 48 hours for the results. Pray that it is clear of any abnormalities!
She is walking with the walker further each day. Today, she walked back out in to the hallway, sat down, walked back into the room. Then this afternoon they came and got her and she walked down the hallway and back.
She has regained all of her digestive faculties, which is another huge milestone for recovery. I told Jenny that it had to be the Frosty that Ray Lloyd brought her today for lunch.
It looks like at this point in time, when Jenny gets out of the hospital, she will be going to a rehab facility to get the full range of motion of her legs and feet. It looks like at this point it will be Lucerne Hospital on Gore avenue in Orlando. We are not sure when this will be yet but hopefully this week. We are getting all of the information from the insurance company and the hospital to help make this decision. We will also have a plan for radiation once the results of the bone marrow test are back.
Again, Jenny loves to hear from you, she told me the most favorite time of day is for me to read the emails to her.
Jenny says “Don’t stop praying – keep it up”
Ron
She is walking with the walker further each day. Today, she walked back out in to the hallway, sat down, walked back into the room. Then this afternoon they came and got her and she walked down the hallway and back.
She has regained all of her digestive faculties, which is another huge milestone for recovery. I told Jenny that it had to be the Frosty that Ray Lloyd brought her today for lunch.
It looks like at this point in time, when Jenny gets out of the hospital, she will be going to a rehab facility to get the full range of motion of her legs and feet. It looks like at this point it will be Lucerne Hospital on Gore avenue in Orlando. We are not sure when this will be yet but hopefully this week. We are getting all of the information from the insurance company and the hospital to help make this decision. We will also have a plan for radiation once the results of the bone marrow test are back.
Again, Jenny loves to hear from you, she told me the most favorite time of day is for me to read the emails to her.
Jenny says “Don’t stop praying – keep it up”
Ron
May 4, 2008
An early Sunday update!!!
Dr. Gowan came in and told us the results of the full body X-Ray. The X-Ray was CLEAR! No signs of the cancer showing up in any other bone!!!
That was huge due to what we have able to learn. The Plasmacytoma IS a cancer that can spread (I mentioned in an earlier email that we did not think that it could spread.) The X-ray has shown that it has not spread yet.
One more big test tomorrow. Jenny is having a bone marrow test. This will be to make sure that it has not spread further.
Specifically pray that the bone marrow is clear!
Thanks for all of your replies!!! Jenny loves reading them or me reading them to her, it is very therapeutic.
Ron
Dr. Gowan came in and told us the results of the full body X-Ray. The X-Ray was CLEAR! No signs of the cancer showing up in any other bone!!!
That was huge due to what we have able to learn. The Plasmacytoma IS a cancer that can spread (I mentioned in an earlier email that we did not think that it could spread.) The X-ray has shown that it has not spread yet.
One more big test tomorrow. Jenny is having a bone marrow test. This will be to make sure that it has not spread further.
Specifically pray that the bone marrow is clear!
Thanks for all of your replies!!! Jenny loves reading them or me reading them to her, it is very therapeutic.
Ron
May 3, 2008
We met with the Oncologist this morning, after another success story. Jenny was able to urinate on her own. It seems crazy to be excited about that but it is just another large step in regaining control of all faculties.
Jenny is actually a previous patient of the doctor that that came in today. Last year at this time Jenny was severely anemic, so she went to a Hematologist, Dr. Julio Hajdenberg MD, (for those who want to “google” him), so he already had data on her. He explained that the tumor was plasmacytoma, a form of cancer that attaches to bone.
He wants to X-ray her from head to toe, and do a bone biopsy on Monday to rule out that it has not gone anywhere else. He said he has probably more questions at this point than we do because she is recovering so well from the tumor on the spine. He said that it does not make sense right now. I have an answer for that….keep praying!!! Miracles are cool!
We have been blessed with a staff of positive, Christ like nurses, to aid in Jenny’s recovery. Jenny is so grateful for that.
Today, the Physical Therapist “Michael” was astounded again at the progress being made. So much, he brought in a walker and Jenny was able to stand up. Her legs are getting the signals better everyday. He even had her start to take a couple of steps. Very small but she did it.
I will update you again soon. Keep Praying!!!! This is a true evidence of prayer being answered.
Have a great Sunday Service tomorrow!!!!
Ron & Jenny
Jenny is actually a previous patient of the doctor that that came in today. Last year at this time Jenny was severely anemic, so she went to a Hematologist, Dr. Julio Hajdenberg MD, (for those who want to “google” him), so he already had data on her. He explained that the tumor was plasmacytoma, a form of cancer that attaches to bone.
He wants to X-ray her from head to toe, and do a bone biopsy on Monday to rule out that it has not gone anywhere else. He said he has probably more questions at this point than we do because she is recovering so well from the tumor on the spine. He said that it does not make sense right now. I have an answer for that….keep praying!!! Miracles are cool!
We have been blessed with a staff of positive, Christ like nurses, to aid in Jenny’s recovery. Jenny is so grateful for that.
Today, the Physical Therapist “Michael” was astounded again at the progress being made. So much, he brought in a walker and Jenny was able to stand up. Her legs are getting the signals better everyday. He even had her start to take a couple of steps. Very small but she did it.
I will update you again soon. Keep Praying!!!! This is a true evidence of prayer being answered.
Have a great Sunday Service tomorrow!!!!
Ron & Jenny
May 2, 2008
The good new continues to come!!! 1st, Jenny was lying in bed last night about 8:15 (24 hours after surgery) and she said “watch this” she moved her legs, about 1 inch. We were excited to say the least!! The day continued with greater movement in her legs, surprising the Physical Therapists and visitors that came by. As I write this, she is excited to know that a lot of her feeling is returning and strength in her legs is getting stronger. I don’t want to say that she is out of danger because it looks like there will be many weeks of therapy and rebuilding, but the pathways to the muscles seem to be clearing!!
“Trust in the LORD with all your heart
And do not lean on your own understanding. In all your ways acknowledge Him,
And He will make your paths straight. Proverbs 3:5-6
That verse takes on a new meaning for us!!! J
W got the news of the tumor late tonight. It is a form of cancer called Plasmocytoma. According to what we know right now, it is a slow growing cancer. It is contained and does not spread. It usually forms in the brain. In Jenny, it was not found anyplace else. The cure is surgery, and localized radiation.
We will know more when the Oncologist visits tomorrow.
It could have been a lot worse, so for that we are very grateful to God.
Thanks for all of the emails, cards, flowers, and thank you to our friends. We love you all.
I will send more when the doctor visits tomorrow.
Ron
“Trust in the LORD with all your heart
And do not lean on your own understanding. In all your ways acknowledge Him,
And He will make your paths straight. Proverbs 3:5-6
That verse takes on a new meaning for us!!! J
W got the news of the tumor late tonight. It is a form of cancer called Plasmocytoma. According to what we know right now, it is a slow growing cancer. It is contained and does not spread. It usually forms in the brain. In Jenny, it was not found anyplace else. The cure is surgery, and localized radiation.
We will know more when the Oncologist visits tomorrow.
It could have been a lot worse, so for that we are very grateful to God.
Thanks for all of the emails, cards, flowers, and thank you to our friends. We love you all.
I will send more when the doctor visits tomorrow.
Ron
May 1, 2008 evening
Today was a great day! Jenny came out of recovery around 2:00 am and came out of ICU earlier than expected at around 11:30 am. She was moved to room 820 of ORMC.
The Physical Therapy team came in around 3:00 pm for an assessment. They sat her in a chair for a couple of hours and then moved her back where has been relaxing ever since. They had her stand (with help) and they told her to lock her knees. Jenny could not feel it but the knees locked, and then she was able to repeat it. The Therapists were pleased. Not to get hopes up, but it is a start.
We were hoping for the biopsy report today, but we will have to wait until tomorrow for it.
Jenny & I thank you for your calls and emails, prayers and offers of help and are blessed to have you in our lives.
If you want to stop by, Jenny would love to see you. She enjoyed read your emails!!
Ron
The Physical Therapy team came in around 3:00 pm for an assessment. They sat her in a chair for a couple of hours and then moved her back where has been relaxing ever since. They had her stand (with help) and they told her to lock her knees. Jenny could not feel it but the knees locked, and then she was able to repeat it. The Therapists were pleased. Not to get hopes up, but it is a start.
We were hoping for the biopsy report today, but we will have to wait until tomorrow for it.
Jenny & I thank you for your calls and emails, prayers and offers of help and are blessed to have you in our lives.
If you want to stop by, Jenny would love to see you. She enjoyed read your emails!!
Ron
May 1, 2008
I am writing you at about 1:00 a.m. on Thursday, May 1st.
Jenny was rushed to the ORMC Emergency Wednesday morning with severe back spasms and loss of function with her legs.
As you are aware, Jenny has had problems with her back for years, and the 3 discs have been degenerating. Last November, she really started having issues. It has been a day to day struggle trying to figure out the best path for treatment.
The ER did a thoracic MRI and found a mass on a different vertebra that was putting pressure on her spinal cord. She had emergency surgery tonight (Wednesday) at 8:00 pm and she is currently in recovery.
The surgeon said that she came through the surgery great. A lot of blood loss, due to the tumor, so they gave her a transfusion. They were able to remove 85% of the tumor and we will know what the tumor is tomorrow, hopefully.
The surgeon did not paint a real good picture of Jenny regaining the FULL use of her legs, but with that said, we know that “God is in Control”. Jenny knew this information before she went into surgery and said to me that “You would think that I would be freaking out, but I am not, I am calm.” I know where that calm is coming from.
We had an out pouring of love tonight from our friends and family. People all over the country have prayed and are still praying as you read this. Close to 30 people, including 4 of our wonderful Pastors, filled the waiting room for the 5 hours of waiting (3 hours of actual surgery).
Please pray when you read this that Jenny recovers fully. That she is free of the pain that she has had for the last 7 months.
We love you all and covet your prayers!!!
Ron
P.S. All of the kids don’t know about the loss of function yet, I will be telling them today.
Jenny was rushed to the ORMC Emergency Wednesday morning with severe back spasms and loss of function with her legs.
As you are aware, Jenny has had problems with her back for years, and the 3 discs have been degenerating. Last November, she really started having issues. It has been a day to day struggle trying to figure out the best path for treatment.
The ER did a thoracic MRI and found a mass on a different vertebra that was putting pressure on her spinal cord. She had emergency surgery tonight (Wednesday) at 8:00 pm and she is currently in recovery.
The surgeon said that she came through the surgery great. A lot of blood loss, due to the tumor, so they gave her a transfusion. They were able to remove 85% of the tumor and we will know what the tumor is tomorrow, hopefully.
The surgeon did not paint a real good picture of Jenny regaining the FULL use of her legs, but with that said, we know that “God is in Control”. Jenny knew this information before she went into surgery and said to me that “You would think that I would be freaking out, but I am not, I am calm.” I know where that calm is coming from.
We had an out pouring of love tonight from our friends and family. People all over the country have prayed and are still praying as you read this. Close to 30 people, including 4 of our wonderful Pastors, filled the waiting room for the 5 hours of waiting (3 hours of actual surgery).
Please pray when you read this that Jenny recovers fully. That she is free of the pain that she has had for the last 7 months.
We love you all and covet your prayers!!!
Ron
P.S. All of the kids don’t know about the loss of function yet, I will be telling them today.
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