Last week, I got a call from the guru of optice nerve tumors from Grand Rapids, Michigan (Dr. Aaberg). He is very knowledgeable about all of the possible optic nerve treatments and know all of the key doctors working in this area of expertise. He had little to offer me other than IV Avastin, which is a systemic chemo drug. He has only used this treatment one time on a 15-year-old VHL girl ten years ago for a two-year course. It eventually stopped her tumor from growing but never shrank it. He told me at the present time there are no new chemo agents or clinical trials available for my optic nerve tumor. He also told me that there are only 10-15 people like me in the country right now seeking treatment for this VHL type tumor. How did I get so lucky? I talked to this doctor for over an hour. He was already aware of who I was and was very happy to talk to me. I asked him about the gamma knife, radiation, or anything else that could possibly shrink my tumor without vision loss. He mentioned one other type of heat treatment (diathermy), but the patient who received it went completely blind in that eye (his other eye was unaffected). Then over the course of the next six months, his vision returned to where it was pre-treatment, but the good thing is that the tumor died. The risk for me would be complete blindness and not knowing if vision would be restored back to where it is now and/or if the tumor would die completely. He feels that would be pretty risky for me, but wanted me to be aware of it. I told him what Dr. Cohen suggested (the heavy course of steroids) and he thought that was a good option, but he has not used it before. He explained in further depth why I am seeing the way that I am. He said that as the tumor grows, not only does it apply pressure on the nerve sending signals to my brain, but it leaks an exudate (fluid) that causes the area to be inflamed. So the thought behind the high-dose steroids is that you can shock that area to reduce swelling and maybe the fluid would get absorbed. Then perhaps the vision would become more clear. I told him I would call my internist right away to make a decision quickly and he agreed. He said he'd be happy to see me any time, whether I wanted treatment through him or not.
The following day (Friday), I went to see Dr. Havey for medical clearance and to get his opinion on how the high-dose steroids or IV chemo would affect my overall health considering all of my issues. He said I should do the steroids first to reduce the swelling, and see how that goes before moving to chemo. He felt that I could handle the steroids just fine, but should receive the drug in the hospital so I could be closely monitored, as a high dose of steroids can cause high blood pressure, heart attack or hyperglycemia. He said he would admit me as soon as I chose a date and I did all the pre-op work while I was there.
I considered putting it off for a couple of weeks due to insurance issues and scheduling conflicts. However, I decided my health was too important and I was losing sleep worrying about continuing vision loss that I might never get back. So, on Tuesday I became a patient once again at Northwestern. They started the IV and are giving me 1000mg of Prednisone a day. So far, my blood pressure is a little high but stable. I have experience bad headaches and last night my blood sugar was really high (389), so I am now receiving insulin. Today it is under control.
The plan is to get another dose tomorrow and follow my blood sugars throughout the day. Then they ordered me a glucose monitor for home and I will track it for the next month. I will continue to take oral Prednisone at a lower dose (80 mg/day) at home for another four weeks. This is still a rather high dose, as normally I take 6 mg a day.
Hopefully on Saturday I will still be able to go to Camp Timberlee in Wisconsin with Alyssa and her Brownie troop. Keep me in your prayers and I will keep you posted!
Thursday, April 26, 2012
Wednesday, April 11, 2012
Stevo gets a job
We had a great start to the week. Steve landed the job and should be starting April 14. He'll be working for a semi-start-up company doing medical sales to surgeons. The best news is his territory is Illinois, Wisconsin and part of Indiana, and will require only overnight travel. The benefit package appears to be much better than the last company and the funding hopefully will be better as well. Hopefully this time the company will grow big and be bought by another company. Even though we have not received a paycheck yet, we just feel so blessed that he got his job. A big weight has been lifted.
I went for more physical therapy and the eye doctor recently. In addition to the good, I have been having some stomach issues and pain in my abdomen and just so happen to have a general surgeon on Tyler's travel soccer team. At our game Saturday, I had a physical consultation in the parking lot. I found I have two types of hernias. One is a ventral hernia up high that was repaired 16 years ago but came back, and the other is an umbilical hernia, so now my belly button is distended out like when I was pregnant. It causes digestive issues. I'll need outpatient surgery but it's a 3-4 week recovery. I plan to do that maybe mid-May.
Yesterday I went to the eye doctor, Dr. Cohen, to track the optic nerve size. He said the tumor has gotten significantly larger and a lot of swelling around it is affecting my vision. Unfortunately he has no answers. We put in several calls to other eye experts, one in Michigan and two in Philadelphia, and late this afternoon Dr. Cohen told me the two doctors in Philly recommended I be admitted to the hospital for extremely high dose steroids to bring the swelling down. When I asked why in the hospital, he said the high dose steroids will cause me to gain extra fluid weight as a side effect, which can affect my heart and kidneys and I need to be closely monitored. Afterward I'll continue steroids for about a month and hopefully it'll keep the swelling down enough that I don't lose more vision. He'll call my internist, Dr. Havey, to see if it is safe to do this and if we can get it done before there is more permanent damage. Meanwhile, we have not heard from the Michigan doctor yet. Looking online, there are not many patients with optic nerve tumors or doctors with experience in this area. I NEED A MIRACLE.
Whatever they do, they only have three weeks to figure it out. I have a give forward-style trip to take. I'm going to Atlanta to visit Sheila and her family and we'll play, have girl time and a little R&R. I am glad that I'm getting away.
I'm working on the projects that I want to get done before school is out. We got the carpet cleaned and next we're getting the house cleaned. Outdoor soccer is in full swing. We have three games on Saturday.
We had Easter with the family, which was fun. I think I drank too much but it was so nice to get out and it was really relaxing. The Easter Bunny came to our house so there were lots of candy, gum and treats. Steve even got me Trinidads.
Today I picked up my two new pairs of glasses. You have no idea what a difference. My prescription had changed so much and these glasses are so much better. I still want to look at lights for the house and I really want to organize my photos and closets so that I can enjoy the kids when they get out of school.
I went for more physical therapy and the eye doctor recently. In addition to the good, I have been having some stomach issues and pain in my abdomen and just so happen to have a general surgeon on Tyler's travel soccer team. At our game Saturday, I had a physical consultation in the parking lot. I found I have two types of hernias. One is a ventral hernia up high that was repaired 16 years ago but came back, and the other is an umbilical hernia, so now my belly button is distended out like when I was pregnant. It causes digestive issues. I'll need outpatient surgery but it's a 3-4 week recovery. I plan to do that maybe mid-May.
Yesterday I went to the eye doctor, Dr. Cohen, to track the optic nerve size. He said the tumor has gotten significantly larger and a lot of swelling around it is affecting my vision. Unfortunately he has no answers. We put in several calls to other eye experts, one in Michigan and two in Philadelphia, and late this afternoon Dr. Cohen told me the two doctors in Philly recommended I be admitted to the hospital for extremely high dose steroids to bring the swelling down. When I asked why in the hospital, he said the high dose steroids will cause me to gain extra fluid weight as a side effect, which can affect my heart and kidneys and I need to be closely monitored. Afterward I'll continue steroids for about a month and hopefully it'll keep the swelling down enough that I don't lose more vision. He'll call my internist, Dr. Havey, to see if it is safe to do this and if we can get it done before there is more permanent damage. Meanwhile, we have not heard from the Michigan doctor yet. Looking online, there are not many patients with optic nerve tumors or doctors with experience in this area. I NEED A MIRACLE.
Whatever they do, they only have three weeks to figure it out. I have a give forward-style trip to take. I'm going to Atlanta to visit Sheila and her family and we'll play, have girl time and a little R&R. I am glad that I'm getting away.
I'm working on the projects that I want to get done before school is out. We got the carpet cleaned and next we're getting the house cleaned. Outdoor soccer is in full swing. We have three games on Saturday.
We had Easter with the family, which was fun. I think I drank too much but it was so nice to get out and it was really relaxing. The Easter Bunny came to our house so there were lots of candy, gum and treats. Steve even got me Trinidads.
Today I picked up my two new pairs of glasses. You have no idea what a difference. My prescription had changed so much and these glasses are so much better. I still want to look at lights for the house and I really want to organize my photos and closets so that I can enjoy the kids when they get out of school.
Sunday, April 1, 2012
Things are getting brighter
At the end of February I went to Northwestern Memorial to see who I thought was my neurosurgeon, Dr. Bendok, in person. I had not seen him in more than a year and a half, although over this time my internist, Dr. Havey, had been making sure I was obtaining MRIs of my brain and spine every six months and sending all MRI scan reports to Dr. Bendok's office. When Steve and I walked into the office, the first question he had for me was, "What does your neurosurgeon think of the scans and changes you've had in the last year and a half?" Steve and I both looked at each other and said, "What doctor?" Dr. Bendok thought I was seeing a doctor at MD Anderson. We told him we were understanding that he had been my doctor since Dec. 2009, when I had returned from MD Anderson with complications and he became my physician through the ER, since one of his partners, Dr. Chandler, had told me he would not follow me with complications.
Luckily, there have been minimal changes in my brain tumor and some growth in two spinal cord tumors, and as I am asymptomatic, Dr. Bendok did not recommend doing any treatments or surgery. Before leaving his office, we confirmed that he would be taking care of me from this point forward.
Of biggest concern is herniation in my cervical spine. It is herniated from the top of my neck to my upper back. Basically, it's like the bones are pushing down and all of the soft areas that normally protect the nerves are squished out, and what I feel is pain in my left upper arm and deep bone pain in my right arm to my elbow, as well as numbness down to my fingers on the right side. So after wondering these past two years if I had a dormant infection or metastasis, had this doctor actually looked at these reports prior to this appointment, I would have had this answer long ago. Instead, this problem has only just worsened.
Regarding treatment, he said I may require cervical fusion, which would entail putting in rods and a bone graft to stabilize my upper spine, yet it may only prevent this pain from worsening. He mentioned steroid injections also. He did not want to do either of these two options at this time due to my history of infection with the last surgery. As for now, I go to the Rehab Institute of Chicago for traction and physical therapy twice a week. Things seem to be getting a little better, yet I don't think the pain will ever completely go away.
Other than seeing the neurosurgeon, I've had two precancerous skin treatments on my arms and chest with blue lights, which appears to work well with squamous and basil cell cancers.
Also, I've had two steroid injections in my right foot for a painful area where my bones are rubbing together, and eventually it will require surgery to have scar tissue removed.
Since January 15, I have been paying all medical expenses out of pocket because Cobra had not kicked in, but I received a call this past week with the best news I've had all year: the state finally decided to approve me for Medicare (woo hoo!) and not make me wait for enrollment in July. This week I hope to see if they can retroactively submit all my medical bills from Feb. 1st for coverage under Medicare.
So there is one prayer answered. We shall find out soon if another prayer is answered, as Steve has had a final interview with a company last Thursday and should know something early this week.
I saw my low-vision eye specialist and placed my order yesterday at Costco for new magnifier glasses. My vision has worsened, yet the best they can offer is just magnification and better lighting.
I received a phone call several weeks ago that my aunt (my real dad's sister) went into liver failure and was not doing well. She didn't suffer long and recently passed away. Upon going to her services, I reconnected with a lot of family from my father's side, most of whom I have not seen or spoken with for many years. Sadly, it took a funeral to reconnect us and we are now planning a happier family reunion in about a year. At the service, I sat next to my 70-year-old aunt who has recently been diagnosed with VHL. Her doctors (the same as mine) said she is probably the oldest person ever to have been diagnosed with VHL. She never went to the doctor and was asymptomatic until recently.
Steve and Tyler have had quite a busy spring break week seeing colleges. They went to Western Michigan, Northern Illinois University, and National Louis University. The latter is really small. Tyler already decided he needs at least a mid-sized college that has a good sports program. He has not chosen his field of choice yet but would like to play soccer if possible. Today he is at Northern playing with their soccer team.
Alyssa and I have been very busy as well. We have mostly done things locally. We went downtown to Chicago one day, taking the train to the city and cabbing over to American Girl and Navy Pier. The store provided us with a personal shopper for two hours due to my vision. They were so nice. It was like the royal treatment. Then we saw Mirror Mirror, the movie, and Alyssa has had many play dates. I've seen Hunger Games and October Baby, too. For me it was a good week because I love movies and I was able to get out and do something I enjoy.
Although the week was fun, I'm exhausted and looking forward to the return of school tomorrow.
St. Patrick's Day was a very special day for me as it marked the close of a very thoughtful fundraiser set up by Diane and Jim Lipuma. My life has truly been touched by the most amazing, giving, thoughtful, sensitive friends as well as strangers who have heard my story/blog. Even though some have never met me or my family, they have made donations to help alleviate my medical bills. It's hard to put into words how that gesture of giving makes you feel, even though I feel like I have done nothing out of the ordinary myself. I believe anyone who was in my circumstances would rise up and live the same lifestyle I do.
I have learned from this experience and have passed on and given forward to others as well as told many others of the GiveForward program. Specifically, I would like to thank everyone who donated, large or small, and all of you who have passed along my story, as well as the two families who donated $500 as matching donors. Both were made anonymously, yet I know they were both friends of Diane and Jim. One of them posted the comment, "God Bless You." Every donation was greatly appreciated. The comments were so touching and have inspired me.
The total contribution brought in a phenomenal amount of slightly over $10,000, which I just received yesterday. Tomorrow I'm opening a special account to keep this money in as the money is going to be used for medical costs. Recently I ordered two pair of glasses. Thank you Shelly for the frames at your cost. In addition, I'm going to upgrade my phone to an iPhone 4G so that I can talk to Siri and have her do things for me. I'm so excited. I might need an Apple class but it's got to be easier than how I do it now. I also really need to get some better lighting throughout my house, like under-counter and brighter lights.
For now, life is looking better and the days are looking brighter. I'm looking forward to spring and spending Easter with my relatives, who I have not seen in months. Hopefully you've all had a wonderful spring break and are returning home safely. I think we only have about 40 more school days left until we're back in the swing of summer. I'd better get my project list in order. Hoping the weather returns back to our 70-degree weather soon.
Luckily, there have been minimal changes in my brain tumor and some growth in two spinal cord tumors, and as I am asymptomatic, Dr. Bendok did not recommend doing any treatments or surgery. Before leaving his office, we confirmed that he would be taking care of me from this point forward.
Of biggest concern is herniation in my cervical spine. It is herniated from the top of my neck to my upper back. Basically, it's like the bones are pushing down and all of the soft areas that normally protect the nerves are squished out, and what I feel is pain in my left upper arm and deep bone pain in my right arm to my elbow, as well as numbness down to my fingers on the right side. So after wondering these past two years if I had a dormant infection or metastasis, had this doctor actually looked at these reports prior to this appointment, I would have had this answer long ago. Instead, this problem has only just worsened.
Regarding treatment, he said I may require cervical fusion, which would entail putting in rods and a bone graft to stabilize my upper spine, yet it may only prevent this pain from worsening. He mentioned steroid injections also. He did not want to do either of these two options at this time due to my history of infection with the last surgery. As for now, I go to the Rehab Institute of Chicago for traction and physical therapy twice a week. Things seem to be getting a little better, yet I don't think the pain will ever completely go away.
Other than seeing the neurosurgeon, I've had two precancerous skin treatments on my arms and chest with blue lights, which appears to work well with squamous and basil cell cancers.
Also, I've had two steroid injections in my right foot for a painful area where my bones are rubbing together, and eventually it will require surgery to have scar tissue removed.
Since January 15, I have been paying all medical expenses out of pocket because Cobra had not kicked in, but I received a call this past week with the best news I've had all year: the state finally decided to approve me for Medicare (woo hoo!) and not make me wait for enrollment in July. This week I hope to see if they can retroactively submit all my medical bills from Feb. 1st for coverage under Medicare.
So there is one prayer answered. We shall find out soon if another prayer is answered, as Steve has had a final interview with a company last Thursday and should know something early this week.
I saw my low-vision eye specialist and placed my order yesterday at Costco for new magnifier glasses. My vision has worsened, yet the best they can offer is just magnification and better lighting.
I received a phone call several weeks ago that my aunt (my real dad's sister) went into liver failure and was not doing well. She didn't suffer long and recently passed away. Upon going to her services, I reconnected with a lot of family from my father's side, most of whom I have not seen or spoken with for many years. Sadly, it took a funeral to reconnect us and we are now planning a happier family reunion in about a year. At the service, I sat next to my 70-year-old aunt who has recently been diagnosed with VHL. Her doctors (the same as mine) said she is probably the oldest person ever to have been diagnosed with VHL. She never went to the doctor and was asymptomatic until recently.
Steve and Tyler have had quite a busy spring break week seeing colleges. They went to Western Michigan, Northern Illinois University, and National Louis University. The latter is really small. Tyler already decided he needs at least a mid-sized college that has a good sports program. He has not chosen his field of choice yet but would like to play soccer if possible. Today he is at Northern playing with their soccer team.
Alyssa and I have been very busy as well. We have mostly done things locally. We went downtown to Chicago one day, taking the train to the city and cabbing over to American Girl and Navy Pier. The store provided us with a personal shopper for two hours due to my vision. They were so nice. It was like the royal treatment. Then we saw Mirror Mirror, the movie, and Alyssa has had many play dates. I've seen Hunger Games and October Baby, too. For me it was a good week because I love movies and I was able to get out and do something I enjoy.
Although the week was fun, I'm exhausted and looking forward to the return of school tomorrow.
St. Patrick's Day was a very special day for me as it marked the close of a very thoughtful fundraiser set up by Diane and Jim Lipuma. My life has truly been touched by the most amazing, giving, thoughtful, sensitive friends as well as strangers who have heard my story/blog. Even though some have never met me or my family, they have made donations to help alleviate my medical bills. It's hard to put into words how that gesture of giving makes you feel, even though I feel like I have done nothing out of the ordinary myself. I believe anyone who was in my circumstances would rise up and live the same lifestyle I do.
I have learned from this experience and have passed on and given forward to others as well as told many others of the GiveForward program. Specifically, I would like to thank everyone who donated, large or small, and all of you who have passed along my story, as well as the two families who donated $500 as matching donors. Both were made anonymously, yet I know they were both friends of Diane and Jim. One of them posted the comment, "God Bless You." Every donation was greatly appreciated. The comments were so touching and have inspired me.
The total contribution brought in a phenomenal amount of slightly over $10,000, which I just received yesterday. Tomorrow I'm opening a special account to keep this money in as the money is going to be used for medical costs. Recently I ordered two pair of glasses. Thank you Shelly for the frames at your cost. In addition, I'm going to upgrade my phone to an iPhone 4G so that I can talk to Siri and have her do things for me. I'm so excited. I might need an Apple class but it's got to be easier than how I do it now. I also really need to get some better lighting throughout my house, like under-counter and brighter lights.
For now, life is looking better and the days are looking brighter. I'm looking forward to spring and spending Easter with my relatives, who I have not seen in months. Hopefully you've all had a wonderful spring break and are returning home safely. I think we only have about 40 more school days left until we're back in the swing of summer. I'd better get my project list in order. Hoping the weather returns back to our 70-degree weather soon.
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