On Saturday I had my appointment with Dr. Palumbo, the doctor who will be coordinating care going forward. All and all we thought it was a very positive appointment. He confirmed that I do indeed fall into Category 1 of Systemic Mastocytosis, which is the best category to be in! While the bone marrow penetration is high there does not appear to be any organ involvement or impairment.
And he said the bone marrow percentage is not necessarily indicative of long term prognosis. While there is no way of knowing how the disease will progress he was encouraged by the fact that I've had it for eleven years now and it still is in Stage 1/Category 1. He was confident that my long term prognosis is good!! And that our focus should be on getting these symptoms under control so I can get back to functioning in everyday life. He explained that all the testing and procedures over the past few weeks have effectively destabilized the mast cells which is why I've been having so many attacks. He believes over the next week or so I should become stabilized and we should start to see some results from the medications.
So I meet back with him in a month and we'll see where we are then. If the current medications prove ineffective they will send me down to the National Institutes of Health in MD for evaluation and development of a more aggressive treatment plan. However, I really think the medications along with the life style changes are going to work to get the symptoms under control. I am very encouraged.
My parents being in town has been a HUGE help. They are going to stay through this week and I think by next week I'll be ready to be on my own.
Thank you to everyone for the prayers and support.
2 Corinthians 1: 6-11
6) If we are afflicted, it is for your comfort and salvation; and if we are comforted, it is for your comfort, which you experience when you patiently endure the same sufferings that we suffer. 7) Our hope for you is unshaken, for we know that as you share in our sufferings, you will also share in our comfort. 8)For we do not want you to be ignorant, brothers, of(the affliction we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself. 9) Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. 10) He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again. 11) You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.
Tuesday, May 5, 2009
Mmm... Taco Night - Thank you Sam!
We haven't had a Taco Night in awhile so when Sam, a girlfriend of mine, brought over a taco dinner we were excited to enjoy. She also brought over their sombrero for us to wear during dinner, a tradition in their house on taco night.
The girls from our church have been bringing over dinners to help out this week and what a help it's been- so very sweet.
Check out pop-pop sporting the sombrero in the background
"I can't hear you Mom."
Enjoying our Taco Night outside
The girls from our church have been bringing over dinners to help out this week and what a help it's been- so very sweet.
Check out pop-pop sporting the sombrero in the background
Enjoying our Taco Night outside
Saturday, May 2, 2009
Friday, May 1, 2009
Health update...
Below is an update that I sent out via e-mail earlier this week on the health front. Since then I've had a few tough days. Even with all the pre-medication and precautions taken at the hospital the contrast from the CT Scan did indeed send me into yet another attack. We had to use the Epipen at home (injection of epinephrine). After the epipen I was still having a reaction so Ja rushed me over to my immunologist. He gave me a good dose of steroids and another injection of epinephrine. That evening I had some minor symptoms but nothing serious or life threatening.
This morning I woke up sick and have been fighting symptoms all day. According to the immunologist it is clear from the results of my tests and from my symptoms that the mast cell burden on my body is at a dangerous level and we need to get a more aggressive treatment plan together and fast. I don't know what that means exactly but he bumped up my appointment from May 11th to tomorrow at 1:30.
---------------------------------
Dearest Family,
Praise the Lord, we had the less difficult report from the oncologist yesterday! There has been no development of a secondary hemotological disease, like Leukemia, which was the concern. I do most certainly have Systemic Mastocytosis with a strong penetration (greater than 30%) of the mast cells in the bone marrow and some of the mast cells are atypical. This is a high penetration and means the disease has progressed strongly over the past eleven years. This, while it brings a flurry of other health and life challenges for us to face, does not bring with it the poor prognosis and immediate challenges that the doctors were bracing us for. The bone marrow does contain lymphoid infiltrate associated with the mast cell infiltrate. This potentially indicates an associated clonal hematopoietic disease but no evidence of it being so at this time. So in layman's terms - there is the potential of a serious blood disease developing in the future. Of course, this will have to be very closely monitored but for now we are Lymphoma, Leukemia and Cancer free!! I know this is a direct answer to prayer.
Here's what we have to face going forward: I need to become much more diligent to avoid attack triggers and even with the best of management I can expect to have bad days. The disease is progressive and at this time there is no cure. Yes, the attacks are scary and they are painful and the bad days are hard to function through but I feel that we are not alone in these struggles and that gives me a great deal of comfort and strength. I still have some testing go through to make sure there are no Lymph nodes in the organs and bones, but based on the bone marrow the doctor fully expects the findings to be normal. All testing should be wrapped up by next week and then we meet back with the doctor to get together a better suited treatment plan.
We are thrilled; we are thankful; we are humbled. Thankful that God choose to spare us from the toughest of diagnosis's and thankful for the flood of prayers for us. Ja and I could really feel the prayers. We could feel a peace at a time where it didn't make sense to feel peace. We felt a sense of hope in a time when doctors were trying to convince us not to. We are changed and I pray it is forever. It's like a light has been cast on our lives and we realized that our hopes and our desires were in all the wrong places. I believe that this disease is beautiful form of God's grace in our lives. Without it maybe we wouldn't have been lulled out of our false sense of security. Maybe our hopes would have remained where they shouldn't be - in each other, in Jason's career, in our children... in this life.
Father, please keep us shaken and teach us to love You more than we love anything else.
Romans 8:18-28
18I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. 19The creation waits in eager expectation for the sons of God to be revealed. 20For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope 21that the creation itself will be liberated from its bondage to decay and brought into the glorious freedom of the children of God. 22We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. 23Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption as sons, the redemption of our bodies. 24For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? 25But if we hope for what we do not yet have, we wait for it patiently. 26In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. 27And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will. 28And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Again, thank you for the prayers and for reaching out.
This morning I woke up sick and have been fighting symptoms all day. According to the immunologist it is clear from the results of my tests and from my symptoms that the mast cell burden on my body is at a dangerous level and we need to get a more aggressive treatment plan together and fast. I don't know what that means exactly but he bumped up my appointment from May 11th to tomorrow at 1:30.
---------------------------------
Dearest Family,
Praise the Lord, we had the less difficult report from the oncologist yesterday! There has been no development of a secondary hemotological disease, like Leukemia, which was the concern. I do most certainly have Systemic Mastocytosis with a strong penetration (greater than 30%) of the mast cells in the bone marrow and some of the mast cells are atypical. This is a high penetration and means the disease has progressed strongly over the past eleven years. This, while it brings a flurry of other health and life challenges for us to face, does not bring with it the poor prognosis and immediate challenges that the doctors were bracing us for. The bone marrow does contain lymphoid infiltrate associated with the mast cell infiltrate. This potentially indicates an associated clonal hematopoietic disease but no evidence of it being so at this time. So in layman's terms - there is the potential of a serious blood disease developing in the future. Of course, this will have to be very closely monitored but for now we are Lymphoma, Leukemia and Cancer free!! I know this is a direct answer to prayer.
Here's what we have to face going forward: I need to become much more diligent to avoid attack triggers and even with the best of management I can expect to have bad days. The disease is progressive and at this time there is no cure. Yes, the attacks are scary and they are painful and the bad days are hard to function through but I feel that we are not alone in these struggles and that gives me a great deal of comfort and strength. I still have some testing go through to make sure there are no Lymph nodes in the organs and bones, but based on the bone marrow the doctor fully expects the findings to be normal. All testing should be wrapped up by next week and then we meet back with the doctor to get together a better suited treatment plan.
We are thrilled; we are thankful; we are humbled. Thankful that God choose to spare us from the toughest of diagnosis's and thankful for the flood of prayers for us. Ja and I could really feel the prayers. We could feel a peace at a time where it didn't make sense to feel peace. We felt a sense of hope in a time when doctors were trying to convince us not to. We are changed and I pray it is forever. It's like a light has been cast on our lives and we realized that our hopes and our desires were in all the wrong places. I believe that this disease is beautiful form of God's grace in our lives. Without it maybe we wouldn't have been lulled out of our false sense of security. Maybe our hopes would have remained where they shouldn't be - in each other, in Jason's career, in our children... in this life.
Father, please keep us shaken and teach us to love You more than we love anything else.
Romans 8:18-28
18I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. 19The creation waits in eager expectation for the sons of God to be revealed. 20For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope 21that the creation itself will be liberated from its bondage to decay and brought into the glorious freedom of the children of God. 22We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. 23Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption as sons, the redemption of our bodies. 24For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? 25But if we hope for what we do not yet have, we wait for it patiently. 26In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. 27And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will. 28And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Again, thank you for the prayers and for reaching out.
Tired of waiting for us...
We were all running around the house getting ready for church this past Sunday and I guess Vin got tired of waiting for us.
Sunday, April 19, 2009
Some pictures of our relaxing Saturday night.
Don't those eyes look just like Vinnie's?
With all the craziness going on in our house lately it was awesome to spend our Saturday lounging around- just the four of us. Unfortunately, I was having a tough day health wise and we ended up in the ER again last night with yet another anaphylactic attack. Happily, it didn't evolve into the full blown attack that it was a week ago but it was bad enough. The doctor told us last night that it takes awhile for the medications to start working so hopefully once that happens we can avoid these episodes all together.
Monday, April 13, 2009
Appointment Today
Luca is upstairs asleep and Ja took Vinnie to the store for a much needed rice krispie treat ingredient run. So I'm sitting here in a quiet house with a moment to update...
We have the results of some of the preliminary tests and blood work and the Immunologist I saw today confirmed that I do indeed have Systemic Mastocytosis. My mast cell levels came back 46 times the amount of a normal patient. Also, he said he believes we can rule the immediately deadly forms of the disease involving leukemia.
We loved the doctor and he seemed to have a great amount of knowledge on the disease. Going forward he is going to be the gate keeper, as he put it, for my treatment. Ja and I just bubbled and babbled on and on during the appointment about how relieved we are to finally have a diagnosis and how excited we are to move forward.
After the initial glow of hearing the news that's it's most likely not leukemia wore off I started to hear the other things the doctor said. When Jason came home from work this evening I found his mood had changed as well as he also started "hearing" the words of the doctor as well.
For now, the game plan is to treat the symptoms and to keep attacks like what happened last Monday from happening. He started me on a barrage of medications and I am excited that maybe I can start feeling more like myself again.
And so now we start the process of pinpointing exactly what category and stage of the disease we are facing. Over the next four weeks I need to get a bone scan, see an oncologist to have a bone marrow biopsy done, and see a GI doctor to have the stomach, spleen, and esophagus biopsied. Then after all that jazz is done I meet back with the immunologist to get a more detailed game plan together.
So that's that for now. I leave it there and promise to move on to happier blogging until we have more news.
We have the results of some of the preliminary tests and blood work and the Immunologist I saw today confirmed that I do indeed have Systemic Mastocytosis. My mast cell levels came back 46 times the amount of a normal patient. Also, he said he believes we can rule the immediately deadly forms of the disease involving leukemia.
We loved the doctor and he seemed to have a great amount of knowledge on the disease. Going forward he is going to be the gate keeper, as he put it, for my treatment. Ja and I just bubbled and babbled on and on during the appointment about how relieved we are to finally have a diagnosis and how excited we are to move forward.
After the initial glow of hearing the news that's it's most likely not leukemia wore off I started to hear the other things the doctor said. When Jason came home from work this evening I found his mood had changed as well as he also started "hearing" the words of the doctor as well.
For now, the game plan is to treat the symptoms and to keep attacks like what happened last Monday from happening. He started me on a barrage of medications and I am excited that maybe I can start feeling more like myself again.
And so now we start the process of pinpointing exactly what category and stage of the disease we are facing. Over the next four weeks I need to get a bone scan, see an oncologist to have a bone marrow biopsy done, and see a GI doctor to have the stomach, spleen, and esophagus biopsied. Then after all that jazz is done I meet back with the immunologist to get a more detailed game plan together.
So that's that for now. I leave it there and promise to move on to happier blogging until we have more news.
Wednesday, April 8, 2009
Some news...
It's been a heck of a week in our household. Ever since Luca's birth I've been feeling sick and just not right. On Thursday I got the results of a skin biopsy that knocked me back a bit. I was diagnosed with Urticaria Pigmentosa - Systemic Mastocytosis. A rare disease where the body makes too many mast cells which fire off histamine and other agents. I've been having "attacks" which I thought were migraine attacks for the past ten years and they have been getting progressively worse.
Recently, I've been having symptoms every day and on Monday night I had the mother of all attacks. I was going through the normal routine of a bad attack (flushing, vomiting, diarrhea, muscle aches and shooting pain in my back) when I started to feel really awful. I called to Jason that he needed to call 911. He came into the bathroom, I stood up and passed out. Fortunately, he caught me and as soon as I came to he called 911. The ambulance arrived within minutes. My blood pressure was 50/10, my pulse was faint, I was dazed and not really aware of what was going on but I was conscious and breathing. It didn't take them long to get me stabilized and for the first time I was able to get proper treatment since we had a diagnosis. Once Ja told them what it was they were able to start treatment right away for anaphylaxis. In the past I've ended up in the ER and the doctors weren't sure how to treat me since they didn't know the cause.
Today I'm feeling normal and ready to take on the task of fighting this thing. Because it is so rare the nearest doctor that specializes in Mast Cell Diseases is in Cincinnati. However, I'm going to try going to Vin's allergy/immunologist first. They called him while I was in the ER and he said he has never seen a case of Mastocytosis but was familiar with what it was and was kinda excited about trying to help.
There are several variations of this disease. I believe I have the "nicer" version called indolent mastocytosis that means it won't shorten my life span but will change my life significantly. I believe this because in my mind it makes sense to assume the best until we have test results.
There is no cure. If I have the nice version I can expect to have good days and bad days but I think I can improve on how I have been feeling and that would be good. For now, I'm content and I'm ready for the challenge. Though I'm sure my feelings will bounce back and forth.
Here is some info on Mastocytosis:
What is systemic mastocytosis?
Question:
Could you please explain what systemic mastocytosis is? Is it a type of blood cancer? Is there any prescribed treatment? Is it terminal? I cannot find any reference to this on the web. Thank you.
Answer: Systemic mastocytosis is an uncommon condition involving a certain type of body cell known as a mast cell. Mast cells are found in the connective tissue that surrounds and supports the more ordered tissues and organs of the body. Cartilage, bone and blood are specialised examples of connective tissue.Mast cells mediate the skin's response to mild mechanical injury, producing immediate reddening of the skin due to the release of a chemical called histamine from granules within the cell. An over production of mast cells can occur at any age and is seen slightly more often in males. The exact prevalence of systemic mastocytosis is not known and there has been no link made to it being a familial condition.
Systemic mastocytosis is classified into four forms:
1.The majority of patients have what is referred to as an 'Indolent' form that is not known to alter life expectancy and the associated clinical findings define their treatment and management.
2.If the blood system is involved ('associated haematologic disorder'), then the nature of the blood disorder dictates the treatment required and the prognosis which can vary widely.
3.In 'Aggressive Systemic mastocytosis' the liver, spleen and lymphatic system are involved and the prognosis is poor.
4.'Mast cell Leukemia' is the rarest form of the disease and is invariably fatal.
The clinical symptoms a patient experiences when suffering from the condition are due to the mass of mast cells present in the tissue concerned and include recurrent headaches, itching, flushing, palpitations and fainting, gastric ulcer disease and lower abdominal crampy pain. These systemic changes contribute to bone pain and malabsorption and produce small, reddish brown macules or papules, termed urticaria pigmentosa within the skin which are present in 90 percent or more patients with indolent systemic mastocytosis.
The diagnosis is suspected first on the clinical history and physical findings. A 24-h urine collection for measurement of histamine and other metabolites, blood levels of histamine or the mast cell-derived neutral protease tryptase assist in confirming things. Additional investigations may be required depending on the clinical symptoms. Obviously a tissue diagnosis is easy if the skin lesions are present, but to confirm a diagnosis of the systemic involvement of other organs a bone marrow biopsy and aspiration is often performed.
Recently, I've been having symptoms every day and on Monday night I had the mother of all attacks. I was going through the normal routine of a bad attack (flushing, vomiting, diarrhea, muscle aches and shooting pain in my back) when I started to feel really awful. I called to Jason that he needed to call 911. He came into the bathroom, I stood up and passed out. Fortunately, he caught me and as soon as I came to he called 911. The ambulance arrived within minutes. My blood pressure was 50/10, my pulse was faint, I was dazed and not really aware of what was going on but I was conscious and breathing. It didn't take them long to get me stabilized and for the first time I was able to get proper treatment since we had a diagnosis. Once Ja told them what it was they were able to start treatment right away for anaphylaxis. In the past I've ended up in the ER and the doctors weren't sure how to treat me since they didn't know the cause.
Today I'm feeling normal and ready to take on the task of fighting this thing. Because it is so rare the nearest doctor that specializes in Mast Cell Diseases is in Cincinnati. However, I'm going to try going to Vin's allergy/immunologist first. They called him while I was in the ER and he said he has never seen a case of Mastocytosis but was familiar with what it was and was kinda excited about trying to help.
There are several variations of this disease. I believe I have the "nicer" version called indolent mastocytosis that means it won't shorten my life span but will change my life significantly. I believe this because in my mind it makes sense to assume the best until we have test results.
There is no cure. If I have the nice version I can expect to have good days and bad days but I think I can improve on how I have been feeling and that would be good. For now, I'm content and I'm ready for the challenge. Though I'm sure my feelings will bounce back and forth.
Here is some info on Mastocytosis:
What is systemic mastocytosis?
Question:
Could you please explain what systemic mastocytosis is? Is it a type of blood cancer? Is there any prescribed treatment? Is it terminal? I cannot find any reference to this on the web. Thank you.
Answer: Systemic mastocytosis is an uncommon condition involving a certain type of body cell known as a mast cell. Mast cells are found in the connective tissue that surrounds and supports the more ordered tissues and organs of the body. Cartilage, bone and blood are specialised examples of connective tissue.Mast cells mediate the skin's response to mild mechanical injury, producing immediate reddening of the skin due to the release of a chemical called histamine from granules within the cell. An over production of mast cells can occur at any age and is seen slightly more often in males. The exact prevalence of systemic mastocytosis is not known and there has been no link made to it being a familial condition.
Systemic mastocytosis is classified into four forms:
1.The majority of patients have what is referred to as an 'Indolent' form that is not known to alter life expectancy and the associated clinical findings define their treatment and management.
2.If the blood system is involved ('associated haematologic disorder'), then the nature of the blood disorder dictates the treatment required and the prognosis which can vary widely.
3.In 'Aggressive Systemic mastocytosis' the liver, spleen and lymphatic system are involved and the prognosis is poor.
4.'Mast cell Leukemia' is the rarest form of the disease and is invariably fatal.
The clinical symptoms a patient experiences when suffering from the condition are due to the mass of mast cells present in the tissue concerned and include recurrent headaches, itching, flushing, palpitations and fainting, gastric ulcer disease and lower abdominal crampy pain. These systemic changes contribute to bone pain and malabsorption and produce small, reddish brown macules or papules, termed urticaria pigmentosa within the skin which are present in 90 percent or more patients with indolent systemic mastocytosis.
The diagnosis is suspected first on the clinical history and physical findings. A 24-h urine collection for measurement of histamine and other metabolites, blood levels of histamine or the mast cell-derived neutral protease tryptase assist in confirming things. Additional investigations may be required depending on the clinical symptoms. Obviously a tissue diagnosis is easy if the skin lesions are present, but to confirm a diagnosis of the systemic involvement of other organs a bone marrow biopsy and aspiration is often performed.
Monday, April 6, 2009
My New Hobbies and a Dear Friend
So I've taken up two new hobbies - sewing and arranging faux flowers. Last month we purchased my first sewing machine and a nice sewing table. Unfortunatley, I have ZERO sewing skills/experience/knowledge so it's going to be a slow process of learning. The first time I sat down to use the machine I broke the thread three times and ended up bending the needle. However, last week I successfully finished my first real project - a table cloth.
And the flower thing - well, I guess it's in my blood. My Mom having been flower shop owner and very talented floral designer must have rubbed off on me. I know what you're thinking - silk flowers are tacky. I thought that too until I found the new generation of faux flowers - The Real Touch flowers. They look and feel incredibly real - no fabric flowers here. If you want to join me in my mania here is a link where you can check them out http://www.flowers-by-design.com/. They are very hard to find and it took many weeks of searching to find a place where I could purchase them online withouth business tax id. Last week I got my first Real Touch flower and am in love. Here is a picture:
I made the table cloth and flowers below for Ms. Helen who is a 88 year old women from our church that we visit on Wednesday mornings. We meant Ms. Helen through our church's "homebound program" that ministers to elderly members who don't have immediate family and can no longer attend church because of medical issues.
I have been so blessed by her. What a surprising and wonderful source of friendship and companionship she's been.
Close up of table cloth
And the flower thing - well, I guess it's in my blood. My Mom having been flower shop owner and very talented floral designer must have rubbed off on me. I know what you're thinking - silk flowers are tacky. I thought that too until I found the new generation of faux flowers - The Real Touch flowers. They look and feel incredibly real - no fabric flowers here. If you want to join me in my mania here is a link where you can check them out http://www.flowers-by-design.com/. They are very hard to find and it took many weeks of searching to find a place where I could purchase them online withouth business tax id. Last week I got my first Real Touch flower and am in love. Here is a picture:
I made the table cloth and flowers below for Ms. Helen who is a 88 year old women from our church that we visit on Wednesday mornings. We meant Ms. Helen through our church's "homebound program" that ministers to elderly members who don't have immediate family and can no longer attend church because of medical issues.
It was two Easter's ago when we first met her. Vin and I brought her a Easter Lily from the church and then we started visiting her once a month which turned into every two weeks and now every week. Every Wednesday morning we go over and Ms. Helen has tea made for she and I and cupcakes or some other delicious treat ready for Vin. Making the tea is no easy task for her but she delights in doing it and refuses to allow me to help.
I have been so blessed by her. What a surprising and wonderful source of friendship and companionship she's been.
She simply adores Vinnie and Luca. Vin always greets her with a very excited hug and kiss. Sometimes I'm afraid he'll knock her over but when she sees him she just beams with delight. He tells her all about his week (usually complete nonsense sprinkled with a few words here and there). A few weeks ago, without any one's prompting he told her he loves her. That just made her day.
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