Nothing again has really changed since the last post but just to dispel rumors before they get started, we are in the process of starting Michelle on hospice. Hospice by no means is any sign of imminent doom but just more of a help for Michelle's comfort and our family's well being. We will get all the help that we need through this service and don't have to worry about any more doctor visits, panic due to lab results, etc. We can now just focus on getting our family ready for what is happening around us and dealing with it appropriately.
Michelle is in great spirits. She has her moments but she is still defying the odds and seemingly dealing with this better than everyone around her. I don't know where she gets it from but she finds the energy to smile, laugh and even give me crap from time to time. I have been testing her competence in asking nearly everyday if I can either buy a motorcycle or a new truck and everyday without fail she shuts me down. Good to see that somethings never change.
As a final note for today, the ward and family have pretty much kept our bellies full on dinners. Please as you come to visit, PLEASE PLEASE PLEASE do not bring dinner unless you have talked to us about it. We are out of fridge space and I don't want anything to be wasted. Also, my kids are constantly of the walls with candy and other sugary treats, please do not bring anymore junk food unless it is for Michelle, I sure don't need anymore either.
Thursday, April 30, 2009
Monday, April 27, 2009
No news is good news: By Justin
Many people have gotten concerned with what's going on since there hasn't been any updates over the last few days. As titled, no news is good news. Since we got her oxygen figured out she has been doing much better. She is still sprouting new spots but is feeling much better each day. We really didn't think if you would have asked us last Monday that she would be here still but she is doing really well the last few days.
Dr. Bentz, or Brandon as he has insisted we call him, came out yesterday for a nice visit. I don't know about you but I have never met a Dr. and a team of care providers that cares so deeply about their patients even after they are no longer in charge of their care. I don't think we would have ever guessed that the team of Dr.'s and nurses would end up being such fantastic friends. Michelle has had a lot of fluid collecting in the right side of her abdomen and it may be related to her liver. Brandon talked to the powers that be and we may take her in for an outpatient (hopefully) procedure to drain the fluid. This should help her feel much better once this is done. She can't go without oxygen still and probably won't ever be able to go off it. She is very reliant on it and it is cranked way up but whatever makes her feel better. Her recent spike in feeling better is a very welcome sight yet for me at the same time is somewhat disheartening as it somewhat gives a sense of false hope but we are all enjoying her recent recovery. We'll take any victory we can get and are still holding out for a miracle.
On another positive note, I came home today to see a huge team of people decorating my yard with beautiful flowers. Some of our old neighbors came out and had a load of mulch delivered and before long a whole team of people were over planting flowers. My yard has never looked better. I've lived here 4 years and in a couple short hours my yard was completely made over. I cannot thank those responsible enough for all that has been done to help my family through this difficult time. I have heard from so many people that I haven't talked to in forever. Many old friends, family, Marine brothers, etc. It has been such a nice reunion of sorts. It's amazing how far and wide something like this can spread and bring out the best in people.
Dr. Bentz, or Brandon as he has insisted we call him, came out yesterday for a nice visit. I don't know about you but I have never met a Dr. and a team of care providers that cares so deeply about their patients even after they are no longer in charge of their care. I don't think we would have ever guessed that the team of Dr.'s and nurses would end up being such fantastic friends. Michelle has had a lot of fluid collecting in the right side of her abdomen and it may be related to her liver. Brandon talked to the powers that be and we may take her in for an outpatient (hopefully) procedure to drain the fluid. This should help her feel much better once this is done. She can't go without oxygen still and probably won't ever be able to go off it. She is very reliant on it and it is cranked way up but whatever makes her feel better. Her recent spike in feeling better is a very welcome sight yet for me at the same time is somewhat disheartening as it somewhat gives a sense of false hope but we are all enjoying her recent recovery. We'll take any victory we can get and are still holding out for a miracle.
On another positive note, I came home today to see a huge team of people decorating my yard with beautiful flowers. Some of our old neighbors came out and had a load of mulch delivered and before long a whole team of people were over planting flowers. My yard has never looked better. I've lived here 4 years and in a couple short hours my yard was completely made over. I cannot thank those responsible enough for all that has been done to help my family through this difficult time. I have heard from so many people that I haven't talked to in forever. Many old friends, family, Marine brothers, etc. It has been such a nice reunion of sorts. It's amazing how far and wide something like this can spread and bring out the best in people.
Thursday, April 23, 2009
How did all this happen? Posted by Justin
Many people that have just started following this blog have asked how all of this happened to Michelle. I thought it appropriate to summarize more or less what brought all this on.
We are pretty sure that it started shortly before we were married. Days before Michelle and I started dating she had a mole on her lower jaw that was removed. The Dr. thought it looked suspiscious and had it sent out for further testing. After a few days and a couple of different evaluations it was determined that the mole looked cancerous but in fact was not. They called it psuedomelanoma. It looked bad but was benign. Five years passed and we didn't give it a second thought until a bump started to form behind and below her left ear. We had a Dr. in Orem look at it and he determined that regardless of what it was that it needed to come out. She went through a very short surgery to remove it it was determined that this tumor was benig so again we felt like we dodged a bullet.
Roughly 11 months later the lump came back along the incision line and we elected to go to a Dr. Hunter at Cottonwood Hospital. He couldn't exactly determine what the problem was but he didn't want to compromise her main facial nerve and given that all signs pointed to the tumor being benign he decided that he would debulk the tumor as much as possible and radiate the remaining tumor so that she wouldn't have facial paralysis. After a couple weeks of pathology andd other tests, Dr. Hunter let us know that the tumor had malignant tendencies and in some ways mimicked melanoma. He than took her back to surgery and had no choice but to remove the tumor, along with the facial nerve. Another Dr. assisted by grafting her seral nerve from her left leg and grafted it in. We thought that margins were clear and it was thought at the time that it was a peripheral nerve sheath tumor. Dr. Hunter evaluated her for several months for follow up. After awhile, she noticed a firmness in her left cheek and aklong the incision line again. Dr. Hunter did a minimally invasive procedure to get samples of tissue to further evaluate. He called about two weeks later and said that the tumor had returned and was appearing to be spreading into her cheek and the surrounding area. He recommended at this point that she be treated by Dr. Bentz at Huntsman Cancer Institute.
We started at Huntsman about a year and a half ago. Dr. Bentz initially consulted her and advised of what he would like to do but always gave us the ultimate decision making power. He has been a tremendous resource for us as a physician and friend. We decided to try a procedure that would remove a big portin of tissue behid and below her ear and bring the skin from her neck up and stitching in place over what was removed. This was roughly a 6 hour procedue and at this point her fourth surgery on this same area. She recovered very well other than a 2-3 bout with shingles that was very painful and caused tremendous swelling on the left side of her face.
Not long after this surgery she formed a loarge blister like lesion behind her ear where most of the problems had taken place before. She went to our family physician and he tried to drain it but nothing really drained. He recommended that we go back to Huntsman. Dr. Bentz took a sample and had pathology take a look, it again was cancer. The decision was made that if we had any chance to beat this thing that a radical resection of all tissue involved would need to go. This included her left ear and her left cheek. Over the course of a 19 hour surgery, the Dr.'s removed the tissue and did a "flap" transfer" from her left thigh to patch in the resected area. This surgery was hell on Michelle and caused her indescribable pain. She again pushed through and overcame this problem and eventually responded well to radiation treatment. We thought that maybe we had this thing beat.
Following all of these procedures, we continued to consult with Dr. Bentz and his team. Scans were done to see if any metastasis had taken place and several spots showed in Michelle's lung and one in her back. We were than handed over to Dr. Akerly, the medical oncologist to determine what could be done to treat the disease. We settled on a more or less experimental treatment called interleukin II. The drug is used to treat people with kidney diseases and cancer. This treatment reqired one week in the hospital and side effects simialr to a bad flu with nausea, retaining water, pain and significant discomfort. She gained roughly 20 pounds during that weak and ended up with some fluid in her lung. After the week in the hospital, she would go 9 weeks with no treatment but would get a scan to determine if it appeared to be working. To our surprise and the Dr.'s, all of the tumors in her lung were smaller and she appeared to be responding to the treatment very well. We decided to go through round 2 of the treatment and through all the side effects, she again did very well.
It was than decided that the best form of treatment for her back would be through radiation. But the problem arose that over a very short period of time the tumor went from the size of a golf ball to roughly the tize of my fist. It was too big for radiation and we were referred to Dr. Yonamura at the University Neurological unit. He performed a surgery that removed two of her vertebrae as the tumor was encroaching on her spinal cord. He did not get all of the tumor and Michelle again had to go through hell on her road to recovering from this surgery. The plan was after the surgery that she would start radiation to treat the remainder of the tumor. She spent 16 days in the hospital and came home, doing pretty well physically. At this point is where my last post begins. Since than everything has gone down hill.
On a more positive note, Michelle recieved so many visitors yesterday and it really seemed to help her out physically. She was able to come out on the porch and visit with family and friends. Although the visits seemed to help, she was exhausted by the end of the day. We are more than willing to accept visitors and I know she loves the company but we ask that if you are going to visit that you please keep your visit brief giving everyone a chance to take a few moments alone with her. She did very well yesterday and I would say that it was probably her best day in the last 4-5 days. We hope to see continual improvement. She has taken her last chemo dose for the next three weeks and is still being treated for an infection that we don't believe exists. Her spirits are strong although her body is extrememly weak. her strength and determination amaze me every day. I do not know anyone that has gone through so much and affected the lives of so many people as she has. I joke with her that if I died that my funeral could fit in a phone booth but there is not a building anywhere that could accomodate all those that love her and that she has affected in her 28 years here on earth. We know that she is in good hands and that the Lord is mindful of her and our family at this difficult time. It hasn't been easy but we know there is a reason for everything that happens and we are prepared for whatever life throws at us.
We are pretty sure that it started shortly before we were married. Days before Michelle and I started dating she had a mole on her lower jaw that was removed. The Dr. thought it looked suspiscious and had it sent out for further testing. After a few days and a couple of different evaluations it was determined that the mole looked cancerous but in fact was not. They called it psuedomelanoma. It looked bad but was benign. Five years passed and we didn't give it a second thought until a bump started to form behind and below her left ear. We had a Dr. in Orem look at it and he determined that regardless of what it was that it needed to come out. She went through a very short surgery to remove it it was determined that this tumor was benig so again we felt like we dodged a bullet.
Roughly 11 months later the lump came back along the incision line and we elected to go to a Dr. Hunter at Cottonwood Hospital. He couldn't exactly determine what the problem was but he didn't want to compromise her main facial nerve and given that all signs pointed to the tumor being benign he decided that he would debulk the tumor as much as possible and radiate the remaining tumor so that she wouldn't have facial paralysis. After a couple weeks of pathology andd other tests, Dr. Hunter let us know that the tumor had malignant tendencies and in some ways mimicked melanoma. He than took her back to surgery and had no choice but to remove the tumor, along with the facial nerve. Another Dr. assisted by grafting her seral nerve from her left leg and grafted it in. We thought that margins were clear and it was thought at the time that it was a peripheral nerve sheath tumor. Dr. Hunter evaluated her for several months for follow up. After awhile, she noticed a firmness in her left cheek and aklong the incision line again. Dr. Hunter did a minimally invasive procedure to get samples of tissue to further evaluate. He called about two weeks later and said that the tumor had returned and was appearing to be spreading into her cheek and the surrounding area. He recommended at this point that she be treated by Dr. Bentz at Huntsman Cancer Institute.
We started at Huntsman about a year and a half ago. Dr. Bentz initially consulted her and advised of what he would like to do but always gave us the ultimate decision making power. He has been a tremendous resource for us as a physician and friend. We decided to try a procedure that would remove a big portin of tissue behid and below her ear and bring the skin from her neck up and stitching in place over what was removed. This was roughly a 6 hour procedue and at this point her fourth surgery on this same area. She recovered very well other than a 2-3 bout with shingles that was very painful and caused tremendous swelling on the left side of her face.
Not long after this surgery she formed a loarge blister like lesion behind her ear where most of the problems had taken place before. She went to our family physician and he tried to drain it but nothing really drained. He recommended that we go back to Huntsman. Dr. Bentz took a sample and had pathology take a look, it again was cancer. The decision was made that if we had any chance to beat this thing that a radical resection of all tissue involved would need to go. This included her left ear and her left cheek. Over the course of a 19 hour surgery, the Dr.'s removed the tissue and did a "flap" transfer" from her left thigh to patch in the resected area. This surgery was hell on Michelle and caused her indescribable pain. She again pushed through and overcame this problem and eventually responded well to radiation treatment. We thought that maybe we had this thing beat.
Following all of these procedures, we continued to consult with Dr. Bentz and his team. Scans were done to see if any metastasis had taken place and several spots showed in Michelle's lung and one in her back. We were than handed over to Dr. Akerly, the medical oncologist to determine what could be done to treat the disease. We settled on a more or less experimental treatment called interleukin II. The drug is used to treat people with kidney diseases and cancer. This treatment reqired one week in the hospital and side effects simialr to a bad flu with nausea, retaining water, pain and significant discomfort. She gained roughly 20 pounds during that weak and ended up with some fluid in her lung. After the week in the hospital, she would go 9 weeks with no treatment but would get a scan to determine if it appeared to be working. To our surprise and the Dr.'s, all of the tumors in her lung were smaller and she appeared to be responding to the treatment very well. We decided to go through round 2 of the treatment and through all the side effects, she again did very well.
It was than decided that the best form of treatment for her back would be through radiation. But the problem arose that over a very short period of time the tumor went from the size of a golf ball to roughly the tize of my fist. It was too big for radiation and we were referred to Dr. Yonamura at the University Neurological unit. He performed a surgery that removed two of her vertebrae as the tumor was encroaching on her spinal cord. He did not get all of the tumor and Michelle again had to go through hell on her road to recovering from this surgery. The plan was after the surgery that she would start radiation to treat the remainder of the tumor. She spent 16 days in the hospital and came home, doing pretty well physically. At this point is where my last post begins. Since than everything has gone down hill.
On a more positive note, Michelle recieved so many visitors yesterday and it really seemed to help her out physically. She was able to come out on the porch and visit with family and friends. Although the visits seemed to help, she was exhausted by the end of the day. We are more than willing to accept visitors and I know she loves the company but we ask that if you are going to visit that you please keep your visit brief giving everyone a chance to take a few moments alone with her. She did very well yesterday and I would say that it was probably her best day in the last 4-5 days. We hope to see continual improvement. She has taken her last chemo dose for the next three weeks and is still being treated for an infection that we don't believe exists. Her spirits are strong although her body is extrememly weak. her strength and determination amaze me every day. I do not know anyone that has gone through so much and affected the lives of so many people as she has. I joke with her that if I died that my funeral could fit in a phone booth but there is not a building anywhere that could accomodate all those that love her and that she has affected in her 28 years here on earth. We know that she is in good hands and that the Lord is mindful of her and our family at this difficult time. It hasn't been easy but we know there is a reason for everything that happens and we are prepared for whatever life throws at us.
Tuesday, April 21, 2009
Here's the truth. Posted by Justin
I have done my best to censor at Michelle's request the blog updates from the last week or so. I asked Michelle for permission to post the truth about the severity of the situation. Michelle came home from the hospital after her last surgery and showed some promise of improvement. After being home for ten days she started to fight an infection. She had a constant fever of over 101 for around 3 days. She also pointed out to me about three spots that had shown up, a lump on the top of her head, one in her armpit and one on the right side of her jaw. I knew what they were as soon as she showed me, we didn't need a Dr's confirmation.
She went to her Dr that afternoon and he confirmed our worst fears. The treatments are no longer working and the cancer is having it's way with her. The three spots have become at last count 44. That is only what we can see and feel. We don't know exactly what's going on inside her body and against her organs. She is on more pain medications than you can possibly imagine, antinausea meds, antibiotics, and chemotherapy. The chemo is a last ditch effort and it would surprise everybody if it worked at all. It isn't designed to cure her at this point, just buy her time. She only has one more day of the chemo and than 23 days off before starting again.
If you have been trying to figure out when to come see her, now is the time. She isn't going anywhere right away, but it is coming. She will not be returning to the hospital if at all possible, she wants to go at home surrounded by her family. It will be difficult for all of us but this is what she wants. We are hoping that it will be a tremendous spiritual experience for our family but our biggest hope is that she will not suffer any longer than she needs to.
As you read this I'm sure this may come as a shock to many of you as we have all held out hope as long as possible. I wish I could give everyone some sort of timeframe but it is coming sooner rather than later. please don't put off saying your goodbyes. If it is too difficult to come see her, we completely understand. She can feel your love and support. Our door is open unless she is not feeling up to visitors but we are accomodating everyone that we can that wants to come see her.
Our ward, family and friends have been fantastic. I cannot say thank you enough to everyone for all that they have done to help and support our family. We are so grateful to her care providers at Huntsman as well. What an amazing faclity it is. We are so blessed to have such an incredible hospital so close. Her Dr's have been incredible as have all of her nurses. We have forged everlasting relationships with many people at the hospital and we will never forget any of them. Please keep Michelle in your prayers but turn your thoughts and prayers to her comfort.
She went to her Dr that afternoon and he confirmed our worst fears. The treatments are no longer working and the cancer is having it's way with her. The three spots have become at last count 44. That is only what we can see and feel. We don't know exactly what's going on inside her body and against her organs. She is on more pain medications than you can possibly imagine, antinausea meds, antibiotics, and chemotherapy. The chemo is a last ditch effort and it would surprise everybody if it worked at all. It isn't designed to cure her at this point, just buy her time. She only has one more day of the chemo and than 23 days off before starting again.
If you have been trying to figure out when to come see her, now is the time. She isn't going anywhere right away, but it is coming. She will not be returning to the hospital if at all possible, she wants to go at home surrounded by her family. It will be difficult for all of us but this is what she wants. We are hoping that it will be a tremendous spiritual experience for our family but our biggest hope is that she will not suffer any longer than she needs to.
As you read this I'm sure this may come as a shock to many of you as we have all held out hope as long as possible. I wish I could give everyone some sort of timeframe but it is coming sooner rather than later. please don't put off saying your goodbyes. If it is too difficult to come see her, we completely understand. She can feel your love and support. Our door is open unless she is not feeling up to visitors but we are accomodating everyone that we can that wants to come see her.
Our ward, family and friends have been fantastic. I cannot say thank you enough to everyone for all that they have done to help and support our family. We are so grateful to her care providers at Huntsman as well. What an amazing faclity it is. We are so blessed to have such an incredible hospital so close. Her Dr's have been incredible as have all of her nurses. We have forged everlasting relationships with many people at the hospital and we will never forget any of them. Please keep Michelle in your prayers but turn your thoughts and prayers to her comfort.
Sunday, April 19, 2009
Update on Michelle from Justin
Michelle was allowed to come home today from the Huntsman Cancer Hospital. She was there for 12 days this time around. She has spent 28 of the last 38 days in the hospital. After several days of fishing for an infection, countless needle sticks and bags and bags of medication, it was determined that she likely never had an infection and that it is either the cancer itself or her body recognizing that there is a problem somewhere and trying to fight it off. Either way, no infection so Dr. Akerly decided to go ahead and start a new chemotherapy treatment. The treatment is designed to help shrink the tumors with very limited side effects. She has to take pills 5 days in a row, 23 days off, 5 days in a row and 23 days off. At that point they will evaluate her to determine if the treatment is working and continue the treatment if effective and discontinue if not.
Michelle is on a Fentanyl pain pump and oxygen 24 hours a day. She is still dealing with a lot of pain from her last surgery as well as other issues that her body is dealing with. Hopefully being home will provide her an emotional boost that will reflect physically and allow her some time to enjoy the kids outside of a hospital room. She really needs to take the next 24 hours to get situated at home before I would like to see her recieve many visitors. Please call me if you are just dying to see her and I will let you know if she is really feeling up for visitors. Her time at home is precious so I would like to allow her as much time to enjoy the kids and her family as much as possible.
As for me, I have one more day in this class before I get a little bit of a break. I have adjusted my work schedule as well to provide me more time at home with the kids at night. I have been blessed with great parents and in laws that not only help with the kids and around the house but also allow me an opportunity to have some much needed time for myself to keep me balanced.
Michelle is on a Fentanyl pain pump and oxygen 24 hours a day. She is still dealing with a lot of pain from her last surgery as well as other issues that her body is dealing with. Hopefully being home will provide her an emotional boost that will reflect physically and allow her some time to enjoy the kids outside of a hospital room. She really needs to take the next 24 hours to get situated at home before I would like to see her recieve many visitors. Please call me if you are just dying to see her and I will let you know if she is really feeling up for visitors. Her time at home is precious so I would like to allow her as much time to enjoy the kids and her family as much as possible.
As for me, I have one more day in this class before I get a little bit of a break. I have adjusted my work schedule as well to provide me more time at home with the kids at night. I have been blessed with great parents and in laws that not only help with the kids and around the house but also allow me an opportunity to have some much needed time for myself to keep me balanced.
Thursday, April 16, 2009
Update from Justin at Michelle's request..
Michelle wanted me to take a minute to update everyone on her current goings on. She is still in the hospital as they are trying to find the source of her infection. She has been recieveing plasma to thin her blood so that they can do a spinal tap. They wanted to do it a couple of days ago but haven't gotten her blood levels where they need to be. They are supposedly going to get it done today but they were supposedly going to just keep her overnight and that was eight days ago. It's a day to day struggle with everyday seeming to bring new challenges.
Michelle has asked me not to share the entirety of what is currently going on but she is fighting hard and trying her best to come home where she feels she will be more comfortable. The Dr's are trying to help her manage her pain levels and have put her back on Fentanyl drip to help her while in the hospital. She cannot go home while on IV meds so they will need to make sure they get her on the right oral meds so that we don't need to keep shuttling her back and forth from home to huntsman so they can experiment with medications. Her radiation treatments have been put on hold until they get her infection figured out at which point they can have her come in to St. Marks for daily treatment for three weeks. After the three weeks, Dr. Akerley, Michelle and I are going to try to determine a treatment plan for the foreseeable future to see where that gets her.
Thank you to everyone that has been up to see her.
Michelle has asked me not to share the entirety of what is currently going on but she is fighting hard and trying her best to come home where she feels she will be more comfortable. The Dr's are trying to help her manage her pain levels and have put her back on Fentanyl drip to help her while in the hospital. She cannot go home while on IV meds so they will need to make sure they get her on the right oral meds so that we don't need to keep shuttling her back and forth from home to huntsman so they can experiment with medications. Her radiation treatments have been put on hold until they get her infection figured out at which point they can have her come in to St. Marks for daily treatment for three weeks. After the three weeks, Dr. Akerley, Michelle and I are going to try to determine a treatment plan for the foreseeable future to see where that gets her.
Thank you to everyone that has been up to see her.
Sunday, April 12, 2009
I am humbled this Easter morning. I have been having a lot of really stressful days, but today is Easter and a day for me to sit and reflect on my life that has been a gift. I think about Jesus and all that he went through for me. I know He has felt the pain I have been enduring. I am so grateful to know that the Resurrection is real and one day I too will be Resurrected. I know that nobody else on earth can understand the pain I have been through, except for Jesus. He knows the pain I've felt from every surgery or treatment. It is beauful to think about our Heavenly Father's plan for me. He died for me that I might live. I have such a strong testimony of my Savior's love and know that He is aware of me and my circumstances.
I am so grateful for everything I have and have been blessed with.
I am excited to see the kids today, hopefully they will still be in their Easter clothes. I would love to be at home with them and seeing their excited faces when they see what the Easter bunny brought them. If I can't go home tonight for a few hours, then they will come up and show me. They are the most adorable kids in the world! I just love them so much. They light up a whole room when they come in (not to mention raise the noise level 100% louder!) Little stinkers.
As far as any news on the infection, we still have no source. They want to take some of the fluid on the outside of my lung and test it today. This requires the Interventional Radiology to use ultrasound and a needle. I thought they were taking fluid out of my lung, but they want to do this either instead or first. I'm not sure. From rumors it sounded like they weren't going inside the lung at all. So, this test they are doing today sounds like it takes a couple more days to get results, so that's probably about how long I will be here. Man, I can't seem to get out of these hospitals once I am admitted. At least I am comfortable here and getting the best treatment. After being at the U of U Hospital, I appreciate Huntsman that much more!
I asked about going home for a few hours today and if Hospital policy lets me, I will be able to. I doubt they will let me go because of Hospital policy or because of insurance reasons. Pray I will get out of here for me will ya?
I am so grateful for everything I have and have been blessed with.
I am excited to see the kids today, hopefully they will still be in their Easter clothes. I would love to be at home with them and seeing their excited faces when they see what the Easter bunny brought them. If I can't go home tonight for a few hours, then they will come up and show me. They are the most adorable kids in the world! I just love them so much. They light up a whole room when they come in (not to mention raise the noise level 100% louder!) Little stinkers.
As far as any news on the infection, we still have no source. They want to take some of the fluid on the outside of my lung and test it today. This requires the Interventional Radiology to use ultrasound and a needle. I thought they were taking fluid out of my lung, but they want to do this either instead or first. I'm not sure. From rumors it sounded like they weren't going inside the lung at all. So, this test they are doing today sounds like it takes a couple more days to get results, so that's probably about how long I will be here. Man, I can't seem to get out of these hospitals once I am admitted. At least I am comfortable here and getting the best treatment. After being at the U of U Hospital, I appreciate Huntsman that much more!
I asked about going home for a few hours today and if Hospital policy lets me, I will be able to. I doubt they will let me go because of Hospital policy or because of insurance reasons. Pray I will get out of here for me will ya?
Saturday, April 11, 2009
There is good reason it's been a few days since I've been on here. I'm sure some have heard and others are hearing rumors, but yes I am back in the hospital. I started having low grade fevers every now and then since I left the U of U hospital. Over last weekend they went up to 101, which they always tell you to call if it gets that high. One of my chest tube sites looks like it could be infected and also looks like it doesn't want to close. So, I went to my family practice Dr and had him take a culture of the site. He put me on a general antibiotic until we figured out what bacteria was growing. I called him on Wednesday morning to see if he'd gotten results back yet. I had woken up that morning with a fever of 102.5. He called me back and told me that there was a very resilient bug in there that would need strong antibiotics, but he's not sure because it could have just been on the skin and wasn't infecting the area. He told me to go to the E.R. and be admitted, but would rather have me see my team of cancer doctors up at Huntsman. Luckily I already had an appointment the same day.
I met with Dr. Akerley and told him about the fevers and what Dr. Christensen had found. He looked at the chest tube site and thought it actually didn't look infected. It wasn't red or having pus drain out from it. Based off of my fevers alone though, he decided to admit me anyway to figure out at very least what was causing the fevers. Soon after I was admitted we started doing many tests. We did blood cultures, urine tests, x rays, and then it was bed time. Thursday we did CAT scans and an MRI to take a close look at all of the hardware in my back from the surgery and make sure it wasn't infected, which can be very very scary. The scans were also to see if there were any spots of infection basically anywhere else. The only thing they've found really is some fluid in my right lung (the same one that collapsed and has a hole), so they want to have Interventional Radiology get in there with a needle, using ultrasound, and draw the fluid out and test it. If that doesn't come back infected, then I'm not sure what they'll do next. We just keep doing test after test and playing the waiting game.
They are having an Easter Egg Hunt up here at the hospital this morning and Justin is bringing up the kids so I can watch them. We are asking if I can be released from the hospital for at least tomorrow so I can be home for Easter. It all depends on if they find an infection. It also depends on what kind of infection they find and how scary it is and how long it will take to treat it. We are hoping we can treat it at home with an IV still in.
So, that's what's been going on. The best news we got this morning is that there doesn't appear to be any infection near or on the hardware in my back! Yay! I was so super worried about that.
In my last post I talked about going to see Dr. Nirula about the hole in my lung. I ended up canceling that because I was admitted the same day. We now also know there is fluid in my lung. I have been on oxygen basically since I have been up here, so I wonder if they both have something to do with it.
Also I had mentioned that my legs, mostly the left had been hurting from overdoing it trying to squat to pick up stuff around the house. I was also partly worried that I might have blood clots. So, we had my legs checked while I've been here and they are blood clot free.
If I think of anything else, I'll add it. My doctors are standing outside my door discussing me right now and will be coming in shortly. I may add another post if they have anything interesting to say.
I met with Dr. Akerley and told him about the fevers and what Dr. Christensen had found. He looked at the chest tube site and thought it actually didn't look infected. It wasn't red or having pus drain out from it. Based off of my fevers alone though, he decided to admit me anyway to figure out at very least what was causing the fevers. Soon after I was admitted we started doing many tests. We did blood cultures, urine tests, x rays, and then it was bed time. Thursday we did CAT scans and an MRI to take a close look at all of the hardware in my back from the surgery and make sure it wasn't infected, which can be very very scary. The scans were also to see if there were any spots of infection basically anywhere else. The only thing they've found really is some fluid in my right lung (the same one that collapsed and has a hole), so they want to have Interventional Radiology get in there with a needle, using ultrasound, and draw the fluid out and test it. If that doesn't come back infected, then I'm not sure what they'll do next. We just keep doing test after test and playing the waiting game.
They are having an Easter Egg Hunt up here at the hospital this morning and Justin is bringing up the kids so I can watch them. We are asking if I can be released from the hospital for at least tomorrow so I can be home for Easter. It all depends on if they find an infection. It also depends on what kind of infection they find and how scary it is and how long it will take to treat it. We are hoping we can treat it at home with an IV still in.
So, that's what's been going on. The best news we got this morning is that there doesn't appear to be any infection near or on the hardware in my back! Yay! I was so super worried about that.
In my last post I talked about going to see Dr. Nirula about the hole in my lung. I ended up canceling that because I was admitted the same day. We now also know there is fluid in my lung. I have been on oxygen basically since I have been up here, so I wonder if they both have something to do with it.
Also I had mentioned that my legs, mostly the left had been hurting from overdoing it trying to squat to pick up stuff around the house. I was also partly worried that I might have blood clots. So, we had my legs checked while I've been here and they are blood clot free.
If I think of anything else, I'll add it. My doctors are standing outside my door discussing me right now and will be coming in shortly. I may add another post if they have anything interesting to say.
Tuesday, April 7, 2009
Well, I got a phone call asking me not to come in for my PET/CT on Friday. Dr. Akerley cancelled it bacause I will be starting radiation and the fact that it would be very uncomfortable for me to lay on my back for that amount of time.
This weekend went by pretty uneventful. The only new thing is that I have been fighting a fever, which got up to 101. I have one of the chest tube sites that doesn't really want to close and doesn't look too great. I went to my family doc on Monday to get it checked out. He did a culture and gave me some stuff to put on it. He also put me on oral antibiotics.
Today has been a really hard day for me painwise. It's my legs this time, mostly the left. I think I did too much squatting this weekend trying to pick things up off the ground. Normally that would be ok, but my legs have no muscle tone right now and that really overdid it for me. I've had a heating pad on it all day and even took a muscle relaxer to help.
Tomorrow I will be meeting with Dr. Akerley for a follow up. I will also be meeting with Dr. Nirula to check on the hole in my lung, to make sure it has healed. I'm sure it has because my breathing hasn't been strained at all. I also will be asking Dr. Akerley about a few new lumps I've found. We're not sure if they are anything, but they showed up at the same time and are the same size. If it was anyone else I wouldn't be worried, but it's me, so of course I worry.
This weekend went by pretty uneventful. The only new thing is that I have been fighting a fever, which got up to 101. I have one of the chest tube sites that doesn't really want to close and doesn't look too great. I went to my family doc on Monday to get it checked out. He did a culture and gave me some stuff to put on it. He also put me on oral antibiotics.
Today has been a really hard day for me painwise. It's my legs this time, mostly the left. I think I did too much squatting this weekend trying to pick things up off the ground. Normally that would be ok, but my legs have no muscle tone right now and that really overdid it for me. I've had a heating pad on it all day and even took a muscle relaxer to help.
Tomorrow I will be meeting with Dr. Akerley for a follow up. I will also be meeting with Dr. Nirula to check on the hole in my lung, to make sure it has healed. I'm sure it has because my breathing hasn't been strained at all. I also will be asking Dr. Akerley about a few new lumps I've found. We're not sure if they are anything, but they showed up at the same time and are the same size. If it was anyone else I wouldn't be worried, but it's me, so of course I worry.
Thursday, April 2, 2009
It's me!!
I'm back! Finally I guess. It's been a very long and frustrating time healing. I haven't read through what Justin has written so I have no idea how updated or what was written, so I guess this is just my point of view.
Since I've been home, I've been out of bed maybe a total of 5-7 hours. It is so hard to move out of the most comfortable position for my back, which is lots of pillows propping me up, and then a couple under my knees. I sleep and pretty much eat this way. I am getting stronger everyday though. I don't have to have help everytime I need to get out of bed now. I feel like I don't need to sleep quite as much either.
It has been nice for the kids to have me home and at least here to listen to them. They seem extra emotional and kind of on a roller coaster since I've been home. I guess that's to be expected. I feel horrible every time Colton wants me to hold him and I can't, but at least I am here with him, right? Wyatt is so hyper and cries easily, and Brooklyn is loving cuddling up to me in bed and reading to me. I'm sure they will all alternate on who's the cuddliest when.
The pain has been the hardest part for me to deal with. I think we are finally figuring it out and getting it under control. My family Dr., who is close to home, has agreed to help figure out my blood levels for my blood clots has also offered to help in anything I need, especially with the pain. I go to him every other day and draw blood to see where my levels are and we adjust the dose of the blood thinners accordingly. I could be on these medications for up to 6 months.
Today I went up to Huntsman to meet with my Radiation oncologist to set up treatment planning, again. I got one new tattoo, which gives me a total of 7 radiation tattoos. Luckily they look like tiny little freckles, which blend in with all the freckles I have anyway. They gave me a sucker with phentinyl (sp?) in it to help with the pain of lying on my back for the planning. They took one CT scan. I guess that was all they had to do. We will be using a mold that we made 4 weeks ago, thank goodness. I didn't want to have to make a new one.
It was a long and tiring day out for me. Tomorrow I'm going back up to Huntsman for a PET/CT scan for Dr. Akerely, my treatment Dr. I meet with him next week to go over it and see where, if anywhere there is cancer and what to do next, other than the radaition, if anything.
So, overall it is so so good to be home, even though this surgery had so many complications and it was a bit frustrating overall, I know it was for the best, and we got a huge tumor out of my back! That's news to celebrate, right? I think so! Give me a few weeks and I might feel up to celebrating. Thanks to everyone for all you love and support, your thoughts and prayers, your meals and service rendered to me and to my family. I couldn't make it without you.
I also know this has been especially hard on Justin. I think he has been exceptionally wonderful in holding our family together. There are so many to thank and to continue to thank. If I start thinking about all the help I've recieved and still recieving, it gets overwhelmingly emotional for me. My mom has been here most days out of the week, working tirelessly with my kids and not a complaint ever heard, my mother in law rearranging her schedule at work to be here when I need her, again with no complaints, just happy to help. My dad for being at the hospital 15 days out of 16, stressing his heart out for his little girl, just wishing he could switch places with me. (oops, I've done it, I'm officially crying now). And for Devon, for working a full time job and then being here with the kids everynight, so Justin could come see me, or go to school. Angels among us? I know so. So, thank you. I love you. You all are so wonderful and help give me the strength to continue this fight for my life.
Since I've been home, I've been out of bed maybe a total of 5-7 hours. It is so hard to move out of the most comfortable position for my back, which is lots of pillows propping me up, and then a couple under my knees. I sleep and pretty much eat this way. I am getting stronger everyday though. I don't have to have help everytime I need to get out of bed now. I feel like I don't need to sleep quite as much either.
It has been nice for the kids to have me home and at least here to listen to them. They seem extra emotional and kind of on a roller coaster since I've been home. I guess that's to be expected. I feel horrible every time Colton wants me to hold him and I can't, but at least I am here with him, right? Wyatt is so hyper and cries easily, and Brooklyn is loving cuddling up to me in bed and reading to me. I'm sure they will all alternate on who's the cuddliest when.
The pain has been the hardest part for me to deal with. I think we are finally figuring it out and getting it under control. My family Dr., who is close to home, has agreed to help figure out my blood levels for my blood clots has also offered to help in anything I need, especially with the pain. I go to him every other day and draw blood to see where my levels are and we adjust the dose of the blood thinners accordingly. I could be on these medications for up to 6 months.
Today I went up to Huntsman to meet with my Radiation oncologist to set up treatment planning, again. I got one new tattoo, which gives me a total of 7 radiation tattoos. Luckily they look like tiny little freckles, which blend in with all the freckles I have anyway. They gave me a sucker with phentinyl (sp?) in it to help with the pain of lying on my back for the planning. They took one CT scan. I guess that was all they had to do. We will be using a mold that we made 4 weeks ago, thank goodness. I didn't want to have to make a new one.
It was a long and tiring day out for me. Tomorrow I'm going back up to Huntsman for a PET/CT scan for Dr. Akerely, my treatment Dr. I meet with him next week to go over it and see where, if anywhere there is cancer and what to do next, other than the radaition, if anything.
So, overall it is so so good to be home, even though this surgery had so many complications and it was a bit frustrating overall, I know it was for the best, and we got a huge tumor out of my back! That's news to celebrate, right? I think so! Give me a few weeks and I might feel up to celebrating. Thanks to everyone for all you love and support, your thoughts and prayers, your meals and service rendered to me and to my family. I couldn't make it without you.
I also know this has been especially hard on Justin. I think he has been exceptionally wonderful in holding our family together. There are so many to thank and to continue to thank. If I start thinking about all the help I've recieved and still recieving, it gets overwhelmingly emotional for me. My mom has been here most days out of the week, working tirelessly with my kids and not a complaint ever heard, my mother in law rearranging her schedule at work to be here when I need her, again with no complaints, just happy to help. My dad for being at the hospital 15 days out of 16, stressing his heart out for his little girl, just wishing he could switch places with me. (oops, I've done it, I'm officially crying now). And for Devon, for working a full time job and then being here with the kids everynight, so Justin could come see me, or go to school. Angels among us? I know so. So, thank you. I love you. You all are so wonderful and help give me the strength to continue this fight for my life.
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