Long overdue again

Things have been busy since my post yet another month ago - time flys. I short order I got pneumonia again and was hospitalized, my sister got married, I turned 35, and finally got the Internet going in the new house.

Medically speaking I have several doctor appointments coming up to deal with my worsening paralysis and get a handle on a new problem - uncontrollable shakes/chills. Hopefully the later is nothing serious and not related to the radiation side effects or cancer crap.

I have dusted off my camera again and have some pictures of the little z's to share. The kids are doing great. Alex is still working on potty training and getting into everything that isn't his. Lee has begun basketball and Dave is helping coach his team. Charlotte finished cheerleading and her squad won 1st place in a competition at the University of MD.

My little z's are not so little anymore.

I apologize for the delay in updating. We moved into the new house and I still don't have Internet. I hijacked Dave's computer to do this quick update.

I had my check up for the cancer and good news is I am still cancer free and in the clear until next year.

My radiation myelitis check wasn't as positive and the disease has progressed. I am now a T2 instead of a T3. I want to be going the opposite direction. I will be starting therapy again soon paying out of pocket until insurance kicks in this January. Just trying to make sure this crap doesn't spread too far and affect my upper extremities.

Dave, the little z's and Maple are all happy and healthy. Once I get the Internet up an running again I will update more frequently.

Next steps

We have a plan to get me back into therapy and hopefully on the path to walking again one day. I will have my cancer check up on September 19 - please pray with me that it is all good news and the cancer is still gone. After the green light is given from the cancer docs I will have an MRI to see the state of the radiation damage then a dose of Avastin. All this should get wrapped up in September and then I will begin therapy in October. My parents are helping us foot the bill until we get more visits from insurance in the new year. Don't even ask how much paying for therapy costs out of pocket - it is outrageous.

If Dave and I were not blessed with such supportive family continuing therapy would not be an option. I am so thankful and pissed off at the same time........I began to type the laundry list of things that upsets me about my current situation and it just went on for too long. I stopped and deleted. I cannot live my life being upset about my current situation. Dave and I always talk about how we have to try to stay positive and focus on moving forward. When the bad news comes it is hard to remember the positive and then when you least expect it the kids put everything in perspective -

Driving home today I told the kids how happy I was when we are all together and how much I miss them when we are apart. Lee chimed in mom you are never alone. I responded yes I am when I am stuck in the yucky hospital without all of you. He said no mom god is always with you so you are never alone.

He is so right and I feel better already.

Dad's visit

My dad came to visit us last week. He took some pictures of the new house and kids. We should be in the new place after Labor Day.

Long overdue - bad news

I have been sitting on this bad news for awhile since it just sucks and I didn't even want to post. I got the results back from my June MRI. There is a new signal at my T2 level in my spine. My neurologist is not sure why and will need to rescan again this September. However, despite the risks of Avastin my neurologist has put it back on the table as an option to stop the spread of my symptoms. In addition, my sensory and motor exams were worse with my therapy doctor up at KKI.

All doctors involved want me back in therapy ASAP. Dave and I did one last ditch effort to appeal to his company for more physical therapy visits. They officially denied our request (again) last week leaving us to pick up the cost for therapy. Our disappointment towards this decision cannot even be expressed in words. If anyone would like to discuss with me why health care in our country needs to be overhauled drop me a line and I could argue my point for hours. It is horrifying that our health care system is based on employers and in the end Dave's employer decided what was best for me medically - and not doctors.

At this point we just need to move forward. My doctors and therapists are hopefully getting together to discuss the next steps, figuring out how much therapy will cost out of pocket, and if Avastin is needed.

Some more bad news I have seriously delayed telling everyone is that we discovered a cancerous lump on Miss Maple. The vet removed it and we decided against chemo. I emailed her pathology report to my old oncologist and he agreed that chemo wasn't a good course of action. The lump hasn't grown back so it is a good sign that they got it all with the surgery. She is in good spirits and health so pray to God this is behind us.

Enough of the bad news. I can be thankful that my cancer is still gone, the kids are healthy, and Dave has a job in this crappy economy.

No more therapy at KKI

So unless Dave can get his company to change their minds I am done with my out patient therapy at KKI until the new year. I cannot appeal to insurance or through the state since it is the company policy that isn't allowing me more therapy and not the insurance company.

This sucks.

I have reworked my schedule to hopefully allow time for me to go ride the electrical stimulation bike and work out locally to keep up my strength. Unfortunately this means Alex has to be back in daycare more often - I was enjoying having him home more.

Should have my results back on the MRI last week and will post if anything note worthy comes up.

In the meantime the kids are loving camp, the pool, and seeing Dave since his schedule has calmed down a little bit. Aunt Michele has been hanging out helping me when Dave is gone lately and the kids are loving having her around. Charlotte is counting down the days to her 6th birthday and Alex is beginning to understand that his is right around the corner.

I can't wait to be in the new place with all our stuff back. Especially my camera! We kick ourselves everyday that we packed up the cameras.

Insurance sucks!

So we are fighting with insurance for more therapy. We got denied any special exception and will have to fight insurance further and possibly do an appeal to the state of Maryland. It is amazing to think that they just lump a person with paraplegia in with everyone else. Wouldn't you think that a person like me would warrant more therapy than someone that sprained their ankle?

I am totally pissed, annoyed, and discouraged. If I do therapy at the rate the insurance company wants I will walk when hell freezes over.

I am going to stop blogging now so I don't write completely offensive things that could screw up more than just my therapy.

June - can you believe it!

Amazing how quickly May passed by. June brings with it the end of therapy for me, the end of another school year for the kids, and one month closer to our new home. I cannot believe Charlotte has completed kindergarten, Lee will be headed to second grade, and Alex is going to turn 3.

No major plans for the summer. If you know me well you know I absolutely love the pool. This wheelchair crap makes going to the pool a big pain in the rear. I have figured out how to lift myself out of the pool but it is getting back into the chair all slippery that is a challenge. Additionally, I am pretty much limited to going swimming with Dave. It is kind of like being a child again and needing adult supervision. Hopefully all this strength training this summer will get me to the point so I can manage the pool on my own. Managing the pool with three kids alone is a whole different ball of wax. Unfortunately Alex didn't acquire a fear of water when I landed myself in a wheelchair so keeping him from drowning trumps my desire to swim.

My MRI got rescheduled for the end of the month. The test will let us know if the myelitis has finally run its course. Pray to God it has. The next hurdle is a couple more years out the entire thing can do damage again. Again pray to God I manage to skip that!

Will keep you update with any news.

Delay with the MRI - end of therapy?

My MRI got delayed until the beginning of June so I will update folks once that happens. Also my therapy days will come to an end at the end of May. We are submitting a request for more therapy days from the insurance company. Until the official request is submitted and we hear back from them I will be on a break. This totally sucks! I have been taking advantage of the pool up at therapy and have progressed to using a walker to do my loose interpretation of walking instead of parallel bars. I pray to god that everything works out and I can continue with therapy. I just have to believe that it will be temporary set back and I will be back on the path to walking again soon.

In the meantime I will begin some strength training locally to keep up my endurance and not loose any strength I have acquired. I will also have to make the trip to Baltimore for open gym time to ride the stimulation bike (they zap my leg muscles while the stationary bike moves the pedals). We are going to request a stim bike for home....hopefully insurance will cover it so I don't have to drive over 2 hours to ride a bike for 45 minutes.

A lot of things rest in the insurance companies hands right now and that makes me uneasy. I just have to keep my faith that it will all work out.

No more Avastin?

I was scheduled to do the next round of Avastin today and then my neuro doc called. Supposedly they presented my case at some conference and ran across another doctor that has been using Avastin. According to the anecdotal evidence, that is very few and far between, they discovered that Avastin might have a risk of stroke and could cause more damage then good a lot sooner than they anticipated. So we canceled today's infusion and scheduled an MRI instead for Monday. My doctor would like to review the MRI and see if the inflammation is gone - if so we will stop doing the Avastin.

So a wait see again. I am grateful that they discovered this new info before anything bad happened to me. I will let everyone know what the MRI says.

April gone already?

I can't believe we are nearing the end of April already. Since my last hospital stay I got back into therapy and into the new swing of things out on Kent Island. I had made such great progress before my last pneumonia and I am trying to get back there after the time away. It is so completely frustrating - two steps forward one step backwards. (you totally notice that a lot of sayings are related to walking when you can't walk anymore)

They began working on the new house last week. I am very excited to move into a completely accessible home. I like our rental and it is light years better than the house in Silver Spring, but I can't wait for all the great things to come with the new digs.

My new oncologist is changing things up a bit with how we track the remission of my cancer. He follows people with CT's and not PET scans........this is making me nervous. They are more than happy to give me a PET if I want but it is up to me. I really don't relish doing the PET scan now that I am unable to walk but I like the security of knowing if anything is active. I will figure out soon how to move forward. Michele said get the scan if I won't be able to sleep - I think she has a point. My new oncologist is however giving me the green light to get all my immunizations updated plus allowing the kids to get all there missing shots. We are all seriously behind and I am nervous since there has been an outbreak of measles. My new doc also suggests testing something in my blood that measure my immune system and if it is low give me IVIG therapy. This might be a reason why I keep getting pneumonia and the drip could get me on the path to fighting bugs off better. Of course we would have to see if insurance will cover it.

Dave is out of town and gearing up for a very busy month of travelling this May. Charlotte learned how to ride her 2 wheel bike and she and Lee are all over the development riding bikes. Alex has a scooter and follows them everywhere. Of course I packed up my camera but I will use Lee's camera and post some pictures soon.

We moved and a trip to the ER

We made it! The move was painful but we made it to the other side and are now in Kent Island, MD. The rental home is better for me then the old house in Silver Spring. I can sleep in a real bed, use the shower, get in and out of the house with the use of a ramp, and finally got my hand controls in the car.

Life was rolling along wonderfully Sunday; sunny day, new place, taking walks with the kids. Then Monday morning I drove up to therapy (first time driving myself) and ended up with a fever and an ambulance ride to the Hopkins ER. I was admitted back to my home away from home with pneumonia and stayed there until Thursday.

I am back in our place. I am still tired and feeling a bit worn down but happy to be out of the hospital.

Life is such a roller coaster.

Avastin done!

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.

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.

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.

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 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.

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.

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.

Thank you Michele

So I have to say a big thanks to Michele for telling me about Jill Bolte Taylor. Oprah has a web cast with her on her soul series and she is on you tube with the ted conference.

So much of what she says relates directly to my life these past years; living in the now, silencing brain chatter, what I need to heal, and what I need to achieve my goals. When she speaks about being in the hospital and encountering people that don't have positive energy and are not showing up 100% to help her - wow! That has happened to me so many times. The other end of that spectrum is some of the wonderful therapists, doctors, nurses, family members, and friends that are totally supporting me.

She says something so perfect - "trying to try is everything"

This is what I have been doing these past years. Simply showing up to try. Trying to give life to Alex, trying to survive, trying to breathe, trying to wiggle my toes. I guess it is all just simply trying to live. I have achieved so much. When I think this way I get excited about what else I have yet to experience. Good stuff.

Thanks again Michele.

A New Year

We always celebrate the beginning of the new year with Lee's birthday. He had a great day and I don't think there is any other star wars toy left to purchase at the store.

Dave and I made a couple of resolutions: eat out less, eat better, and recycle. We eat out too much when we are out and about, looking for a house, or escaping to the cabin. We just need to eat better - something we always do after the holiday abundance is gone. We are awful about recycling. We manage to do cardboard and paper but suck at everything else. The kids are calling us out on it now that they have the whole recycle influence from school. So we have promised the kids we will start doing it. Yep the kids are keeping us in line.

At the end of the holidays, on the new year, I told Dave it's all good - I am alive, not in the hospital, and we are all together. 2009 is starting off on the right foot.

Thank God.