I haven't blogged since Maple?

Wow it has been a long time. We still miss our Maple. She was such an awesome dog and I don't think we will ever not think about her.

We did however bite the bullet and rescued a dog from a local shelter. She is a beagle/lab mix and is so cute. Sundrop. She acts like a cat and insists on lying in sunbeams. She acts like a lab and loves the water. The beagle???? she can't smell worth a crap but has those cute beagle ears.

The kids are great. Alex is 5, Char is 8, and Lee turned 10. I am back in therapy learning how to brace walk and doing a lot of core work in the pool. A fellow cancer blogger asked me to post an article about exercise. It is below. I remember back during cancer treatments I walked a great deal. When I was inpatient I would do laps around the hospital wards and when I was home I would walk Maple. God I miss her! I am a big believer that exercise helps beat stress. I also think it helps lift your spirits. It is hard to stay down in a funk while you are moving.

Exercise and Beat Cancer

Being diagnosed with cancer of any form, whether it is a common form of cancer like breast cancer or a rare disease like mesothelioma, automatically increases your stress level a thousand fold. Unfortunately, there is little you can do to relieve the stress you feel when you hear your doctors tell you that you have cancer and will need to undergo treatment that could include chemotherapy or radiation. Your stress level will be continuously higher for the rest of your life once you learn you have cancer.

You will stress about money, treatment, your family, your future and everything in between. While there isn’t much you can do to alleviate the extreme emotions that will encompass your body and mind for the duration of your cancer treatment, there are ways you can reduce your stress temporarily and boost your immune system so that your body is more receptive to treatment.

Exercise is the easiest way to reduce your stress level. The endorphins released into your body during exercise fight the hormones that cause stress, giving you a feeling of relief during and afterward. The reduction of stress on your body helps your immune system to become stronger, which gives you more strength to fight your cancer, which is imperative.

Regular exercise will not only make you look and feel better about yourself, it will actually make you better. A healthy immune system is better able to fight off your cancer, which makes your prognosis more promising and your treatments more effective. It is not uncommon for cancer patients to experience extreme fatigue and exhaustion during the course of treatment, but exercise will help you fight some of the fatigue and exhaustion you will experience.

Overall, the benefits of exercise during and after cancer treatments are worth more than just a better body image – though that is great, too. The improvement in the quality of your life is paramount to the success of your treatment. Feeling better about yourself and being better on the inside will give you the strength you need to handle the days that your treatment makes you feel worse than ever and to keep on fighting.

In addition to regular exercise, there are also other ways to improve your quality of life. However, exercise is the most beneficial because it helps you in more than just one area. Healthier living, even with cancer, is better than unhealthy living without cancer because at least you are fighting it.

Maple

We lost Maple on Wednesday, April 6. This is her on her final day. Maple was the best dog I could have ever wished for. She was an awesome companion and she is missed beyond words. We will plant a maple tree in her honor.

Not since November!

Man have I been remiss in posting! What has happened since November? We had a great Christmas, Lee turned 9 (can you believe it?) my mom is done with chemotherapy treatments, and Dave and I went to Puerto Rico for Valentines Day.

More specifically my mom got her test results back and there is no evidence of disease - dancing with NED is what I learned along my cancer journey. It is pretty spectacular and we went out celebrating last week when she got the great news. Maybe we will be able to put the cancer crap behind us once and for all.

Also, I decided to go back to school and get my teaching certificate. Some days when I am balancing school, kids, keeping up with my home program, not to forget Dave always being away I wonder what was I thinking! But little man will be in school full time next year and sitting around the house just isn't an option. I will post and let you know how school goes. It is defiantly a lot different then my WVU days.

My mom's recent battle with cancer keeps reminding me that I am lucky to even be sitting here and watching the little z's grow up. Probably good to remember how close I was to losing it all - keeps things in perspective.

Halloween

Only got one picture at Halloween - I am definitely dropping the ball with taking pictures these days.

Alex was something star wars - of course! Charlotte was silver mist (Tinkerbell's friend) and Lee is a scary dude. They got a load of candy and I need it out of my house ASAP.

Time for school!

Wow summer went FAST! Yes I had my moments with the kids when I thought school would never be near but now that they go back next week I can't believe how fast the summer went by. Lee will be in the third grade, Charlotte the second, and Alex is starting pre-K. He will ride the school bus and go for a half day - sort of what kindergarten was like when I was a kid.

Alex's birthday is this weekend and he is turning 4. He LOVES star wars and is super excited to have his own party so he can uninvite his sister when she gets on his nerves. Some days they all get along so well and then others it is WWIII in my house.

I have my big cancer check and next MRI this September. Thinking only positive thoughts that these scans will be easy and free and clear of anything.

Unfortunately this summer my mom was diagnosed with Inflammatory Breast Cancer (IBC). A lot of you might remember that she had breast cancer about 13 years ago so this was a big shock. IBC is not an easy diagnosis and she has a long tough road ahead of her to beat this disease. However she went to MD Anderson in TX for consultation with some of the best IBC doctors in the world and we are very positive that she will prevail. She has a great treatment plan and is able to do all the chemo near her house.

Keep my mom in your prayers!

Here are some pictures of the kids.

Summer

School is out and the kids and I are home for the summer.

Summer consists of .......

pool

bike riding

cheer

football

cabin

video games
arts/crafts

annoying mom

Spring

Long time since my last post and we have been busy. I completed my latest round of therapy up in Baltimore and am doing my home program. It is pretty intense and takes up to 3 hours a day to complete.

I accomplished a big goal for me and our family - we flew to CA for spring break with the kids. One of the only perks of Dave's crazy travel schedule is free hotel rooms and plane tickets.....so we cashed in and took the kids to Disneyland, Palm Desert, and San Diego for spring break. We hooked up with my dad and stepmom at Disney and in the desert. Flying was a lot easier than I thought and now Dave and I feel confident that we can travel anywhere again.

I just had my neuro follow up this week and the damage/inflammation to my spinal cord looks better. My doctor doesn't want to get too optimistic since I guess MRI's are very subjective but she can say without a doubt it is no longer getting worse. Thank God. That news in itself has taken so long to get that I was losing hope there for a little while. She also said my spinal cord looks good and she can see the fibers. So there is still a lot of hope that my therapy can retrain my spinal cord to move my legs again one day.

I am happy spring has sprung, the kids are healthy, Miss Maple is still kicking, and Dave is gainfully employed.

Snow Days

Along with the rest of the mid-Atlantic we got more snow than we know what to do with. The kids we home all last week and finally got back on the bus this Monday. Three kids + 3 ft. of snow + a wheelchair = a crazy Heather. Dave managed to find his way to work and I would have too if it was an option but of course someone had to take care of the children.

Pneumonia

I have been dealing with pneumonia a lot lately. I was in the hospital sick with pneumonia in Nov., diagnosed again in Dec., and yet again this Jan. Being sick and some snow days has totally messed with therapy - hopefully I can get into the swing of things again soon.

Since my lungs are having such a hard time getting well I made an appointment with the lung doc to hopefully clear them up once and for all.

I was reading the pregnant with cancer site and found this awesome free cleaning service for women undergoing chemo... pass it along

cleaningforareason.com

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.