Finally the next round of Avastin is done - only 1 month behind schedule thanks to insurance. Michele got to cart me up to Baltimore at the crack of dawn to get my open gym time on the FES bike (the bike that zaps my legs and turns the pedals for me) done then we had to kill some time before the Avastin drip. We got back to Silver Spring around 4 PM and I was exhausted.
I begin therapy again this Wednesday and plan to switch up to a Wednesday/Friday schedule. I have also gotten off my duff and scheduled my next PET scan for April. I am WAY behind, it was supposed to be taken care of back in October. I am feeling pretty positive that I am still dancing with NED (no evidence of disease) but I have to actually get the deed done even though I completely dread waiting on the test results. Between the MRI test results and PET test results I might consider using the Valium they prescribed me to lower my anxiety.
Still no temporary housing and only 13 days left in our house. You can imagine Dave and I are stressed out. I cannot even begin to go into the entire saga of what this rental house search has become. Let's just say finding a home for a family of 5, with a mom in a wheelchair, a dog that is 80 lbs (okay I am being kind to Maple), and a short term lease is a challenge. Everyone send your prayers, good vibes, and positive thoughts that something will turn up soon.
Monday, March 16, 2009
Wednesday, March 11, 2009
Bloodwork done....
I got my bloodwork done today for the next Avastin drip on Friday. It will be another long day at the Hopkins Cancer Center Friday but I am so used to hanging out in Baltimore waiting on doctors, nurses, pharmacy.....you name it....it isn't any funny anymore. Just apart of life.
I received my own stander/glider today at the house. This will allow me to stand for an hour a day which my therapist recommends while working out my arms by making the machine glide my legs. The kids automatically wanted to jump in and play on it. I threatened immediate removal of all video games if any of them touched it. This sucker is expensive even with insurance kicking in 80%!
We are out of this house in about 2 weeks. Still no temporary housing lined up while we wait on the new house to be built.....that is a whole post in itself that I don't have the energy to go in to.
It will all work out somehow.
I received my own stander/glider today at the house. This will allow me to stand for an hour a day which my therapist recommends while working out my arms by making the machine glide my legs. The kids automatically wanted to jump in and play on it. I threatened immediate removal of all video games if any of them touched it. This sucker is expensive even with insurance kicking in 80%!
We are out of this house in about 2 weeks. Still no temporary housing lined up while we wait on the new house to be built.....that is a whole post in itself that I don't have the energy to go in to.
It will all work out somehow.
Saturday, March 7, 2009
Denied
That was expected - my new insurance denied my avastin treatment. We are going to use Dave's company to override them and get it done since I am way behind. I know we have this option I am just annoyed that the new insurance sucks so much. They recently sent a denial of my wheelchair expenses and are requesting more documentation to justify the need. HELLO I cannot walk - isn't that good enough?
I managed to track my new neurologist down and got my latest MRI results. The inflammation is still going down which is great news. Compared to my latest MRI there wasn't a huge difference but compared to the ones in August (when all this started) there is a drastic change. My neurologist only wants to do 4 more treatments. After that we can revisit but she said the harmful effects of this drug just become a reality if you take it too long. Enough said....I do not want a brain hemorrhage thank you.
I asked if hopefully this was the end of the deterioration phase for me and she said we cannot tell since we stopped it short and didn't let it run its natural course. Also she said 4 years post radiation I could also have more issues.
So a mixed bag news. All of this on top of the whole moving thing, Dave's travel and you can pretty much say I am stressed out.
Things will settle down I just need to have faith and keep moving forward.
I managed to track my new neurologist down and got my latest MRI results. The inflammation is still going down which is great news. Compared to my latest MRI there wasn't a huge difference but compared to the ones in August (when all this started) there is a drastic change. My neurologist only wants to do 4 more treatments. After that we can revisit but she said the harmful effects of this drug just become a reality if you take it too long. Enough said....I do not want a brain hemorrhage thank you.
I asked if hopefully this was the end of the deterioration phase for me and she said we cannot tell since we stopped it short and didn't let it run its natural course. Also she said 4 years post radiation I could also have more issues.
So a mixed bag news. All of this on top of the whole moving thing, Dave's travel and you can pretty much say I am stressed out.
Things will settle down I just need to have faith and keep moving forward.
Tuesday, February 24, 2009
Romans 15:4
For whatever things were written aforetime were written for our learning, that we through patience and comfort of the scriptures might have hope.
...........still hanging onto hope
...........still hanging onto hope
Still waiting on Avastin
I am still waiting on my next treatment - insurance is dragging its feet approving this next round. Last I heard they want another 15 days to determine if they will approve it.
In the meantime, I made it back to therapy after 2 weeks away with my sickness and watching the sick kids. My therapist and I are trying to mount our case to get more therapy visits from insurance. Asking for experimental therapy (avastin) and more rehabilitation therapy at the same time might not be wise but it really just boils down to the fact that I need both so hopefully they will agree.
Until the insurance approves more therapy (pray to god) I will be taking a break to conserve visits for right after my avastin treatment. Since my therapist (and I) believe we get more results after the drip it is best to wait until then to kick therapy into high gear again. It is amazing to think that my insurance company believes I only need 30 physical therapy visits a year. That so doesn't cover what I need to walk again. Well I guess if I want to walk again in about 10 years. Even at this rate it will probably take 3 years..........I just need to keep praying for patience.
Although I will not be going to intense physical therapy 2 x's a week we have devised a plan so I won't be sitting on my butt watching it spread. I have ordered and received my own personal zapper, will be getting a stander, will enlist a local physical therapist to help with my strength training, and attend open gym in Baltimore 3 x's a week to ride the bike that zaps my muscles. So no vacation just a different approach. The therapists in Baltimore also mentioned they want to get me into a study so this whole insurance thing isn't an issue. Wouldn't that be marvelous.
The waiting game continues. I will keep you posted if anything changes.
In the meantime, I made it back to therapy after 2 weeks away with my sickness and watching the sick kids. My therapist and I are trying to mount our case to get more therapy visits from insurance. Asking for experimental therapy (avastin) and more rehabilitation therapy at the same time might not be wise but it really just boils down to the fact that I need both so hopefully they will agree.
Until the insurance approves more therapy (pray to god) I will be taking a break to conserve visits for right after my avastin treatment. Since my therapist (and I) believe we get more results after the drip it is best to wait until then to kick therapy into high gear again. It is amazing to think that my insurance company believes I only need 30 physical therapy visits a year. That so doesn't cover what I need to walk again. Well I guess if I want to walk again in about 10 years. Even at this rate it will probably take 3 years..........I just need to keep praying for patience.
Although I will not be going to intense physical therapy 2 x's a week we have devised a plan so I won't be sitting on my butt watching it spread. I have ordered and received my own personal zapper, will be getting a stander, will enlist a local physical therapist to help with my strength training, and attend open gym in Baltimore 3 x's a week to ride the bike that zaps my muscles. So no vacation just a different approach. The therapists in Baltimore also mentioned they want to get me into a study so this whole insurance thing isn't an issue. Wouldn't that be marvelous.
The waiting game continues. I will keep you posted if anything changes.
Thursday, February 19, 2009
Sickness
Just about everyone in our household has been sick. It started with me. I was down for an entire week. Of course Dave was out of town and my mom and his parents had to come in to help out. Then Charlotte got hit with strep throat. Next up is Lee with strep throat - he is still home hanging out missing school. Dave had a bad cold while he was away. I am just waiting on Alex to get strep then we should be done. I have pretty much been stuck in the house sick or with sick kids for about 2 weeks. I am going crazy!
In the meantime, I am waiting on insurance to approve my next Avastin treatment. I am past due for the drip at this point and just waiting. I hate waiting on the final approval (pray it comes through). I am also past due on my MRI and PET Scan. Hopefully I can get back on track medically soon.
I have no clue where the month of Feb. went. We settle on the house next Thursday. Thank god we managed to sell our home in these bleak economic times. After we settle we can get the new house underway. Since the new home won't be finished until June we will rent back for one month and then move into an apartment for the remainder. The idea of moving twice is painful but this way the kids get to finish out their school year and then we make a clean break over the summer.
I am hoping to get back to therapy next week since I have missed so much with all this sickness. Hopefully I will have had the Avastin and therapy will bring some new cool movements.
Stay healthy.
In the meantime, I am waiting on insurance to approve my next Avastin treatment. I am past due for the drip at this point and just waiting. I hate waiting on the final approval (pray it comes through). I am also past due on my MRI and PET Scan. Hopefully I can get back on track medically soon.
I have no clue where the month of Feb. went. We settle on the house next Thursday. Thank god we managed to sell our home in these bleak economic times. After we settle we can get the new house underway. Since the new home won't be finished until June we will rent back for one month and then move into an apartment for the remainder. The idea of moving twice is painful but this way the kids get to finish out their school year and then we make a clean break over the summer.
I am hoping to get back to therapy next week since I have missed so much with all this sickness. Hopefully I will have had the Avastin and therapy will bring some new cool movements.
Stay healthy.
Thursday, January 29, 2009
We have a contract!
Finally - we have a contract on the house. We have made it through the home inspection, the appraiser came out today, and we close at the end of Feb. Knock on wood, cross your fingers (and toes), and pray to god that this deal goes through without a hitch so we can move on with our lives.
Not only did we finally sell the house but we found a new place to call home. We have decided to purchase a new home on Kent Island. Yes that is still in Maryland for everyone not in our area and no (mom) it isn't in Guam. So as you can gather my mom is not thrilled with the prospect that I am moving her 3 grandbabies farther away but she is happy for me that I will finally get to live in an accessible place. We will finish out the school year in Silver Spring and move over the summer. The kids are surprisingly excited and ready to move. I think all the days and weekends spent looking for a house and keeping ours pristine for showings has worn them down. Today at breakfast they said they wanted to move now and not wait. Go figure....now we have to explain how a house gets built.
Not only did we finally sell the house but we found a new place to call home. We have decided to purchase a new home on Kent Island. Yes that is still in Maryland for everyone not in our area and no (mom) it isn't in Guam. So as you can gather my mom is not thrilled with the prospect that I am moving her 3 grandbabies farther away but she is happy for me that I will finally get to live in an accessible place. We will finish out the school year in Silver Spring and move over the summer. The kids are surprisingly excited and ready to move. I think all the days and weekends spent looking for a house and keeping ours pristine for showings has worn them down. Today at breakfast they said they wanted to move now and not wait. Go figure....now we have to explain how a house gets built.
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