June Update

Aaahhhh.....where does the time go? In the past few weeks it seems like time has stood still and the world just passed by me.

So here is a quick update from the first part of the month. On Friday June 10th I went to work and then went to a surprise party for a collegue and good friend of mine from work. Jessie's friend Lacey came with me since my mom was at the hospital all of the time with Jessie and I really need a little break. So we went to the party, met new people, ate some great food and then headed back to the hospital. At this time Jessie was staying at the neuro unit in the hospital. She was still having seizures and the her neurologist Dr Bigley was trying to get her meds figured out to stop the seizures as she kept having them on a pretty regular basis. Well, this Friday night Jessie had a major seizure. It was horrible! The seizure lasted over 5 minutes and she was then unresponsive for almost over an hour! The nursing staff had to call their rush team to work on Jessie and they didn't know what to do. Eventually Jessie came back around but it was just horrible for Lacey, mom and me. My mom always says that it is harder on the family than it is on the patient. The patient a lot of the times doensn't know what is going on and sleeps through a lot. But the family is aware and awake and see it all and it is just a mental and emotional anguish. Dr Bigley came back to the hospital at midnight to see Jessie and had her sent down immediately for a CAT scan. He said that he didn't know the cause of the seizure but would talk to the surgeon and see what the next step would be.

The next day (Sat) I headed back to the hospital. Mom was staying there 24/7 and was always by Jessie's side. When I got the hospital mom said that Dr Bigley and Dr Morgan agreed that surgery for a shunt is the only thing we can do at this point in time. They had to take Jessie off of the blood thinner meds so her body will be prepared for surgery. So that meant she would go in for the procedure on Wed 6/15. For the next few days Jessie didn't talk to us or eat or anything. She was basically unresponsive. When it came time for the surgery mom and I were at a loss. We didn't know what we could do. Dr Morgan (Jessie's neurosurgeon) explained the procedure and what was going to happen. He said it would only take 30 minutes to put in an external shunt. The shunt would drain fluid from her brain into a bag outside of the body. They would then test the fluid for tumor cells. If it was positive they don't want to recycle it back into her body. That makes sense. If the fluid is negative they will do another procedure and put in an internal shut. This would mean that the fluid would recycle back in the body and re-absorbed. Dr Morgan also explained that both he and Dr Bigley felt that the chances the fluid being the cause of pressure and seizures was low; the chances of it being related to tumor or tumor growth was high. With tears in my eyes, I had to explain to my mom what was going on. I then turned to Dr Morgan and said we don't have any options right now. Mom and I need to hear Jessie speak to us and open her eyes and acknowledge us. She is basically a vegetable to us and that is no way to live. Dr Morgan understood and said that he would do whatever he could. Mom and I said that we know that Jessie's in good hands.

So we left the pre-op room and said our silent prayers. We waited in the waiting area, wishing and hoping for a miracle - that God would turn things around for Jessie.

About an hour later Dr Morgan emerged from the operating area. He said that the surgery went well and that Jessie would be in the recovery area for a while and then go to the ICU for observation due to the external shunt. Mom and I smiled at Dr Morgan and felt a small weight lift off of our shoulders. Since we had to wait to see Jessie we decided to go to my in-laws to visit and grab a quick bite to eat. Mom got to meet my niece and nephew and it was nice to be able to get out for a few hours.

When we went back to the hospital, we saw the result of the surgery. Jessie was awake and talking! She was really upset and confused. She didn't know what was going on. When I told her she had surgery, she got really upset and wanted to know why. She had been so unaware as to what was going on, she thought she was still home. She didn't remember the seizures, the REMSA ambulance trip, the hours at the ER or her hospital stay. Goes back to mom saying we suffer more than her. She spent the next week in the ICU recovering from the surgery, saying crazy stuff due to the drugs. Sample of things she said:
* I know who is going to win the Super Bowl! Who?? Nobody :)
* Give me my rainbow drug monkey so I can push the button!
* What does the feed tube stuff taste like? A hotdog.
* Hey! I want to go with you help me out of this boat. Is my butt hanging off the boat? I don't want a crocodile to bite my butt. They can bite my leg since I can't feel that.

At least she has her sense of humor while on the drugs....

So last week Dr Morgan said that she would have an internal shunt put in as there were no tumor cells in her fluid, at least that is what Jessie said. I was confused since I haven't heard anything from anyone. The nurses didn't say anything, haven't seen the doctors so had to go with what Jessie said. And then, mom and I show up to the ICU and see a note in her room that she is going in for surgery Sunday (6/26) morning. Jessie knew what she was talking about! So mom and I and Lacey show up at the hospital bright and early and follow her to pre-op again. We talk to Dr Morgan and he says that they tested the brain fluid TWICE and it came back NEGATIVE!!! Being negative meant that they could proceed with putting in an internal shunt and work on getting Jessie out of ICU and hopefully back to getting some physical therapy and back home. We were so happy to finally hear the news directly from Dr Morgan I personally just wanted to jump up and give him a big hug. I think he knew how we felt because Lacey asked how long the procedure would be and he joked with us and said 14 hours. Then he laughed and said about 45 minutes. We asked if he could have them shave the other part of her head since she was sporting a Flock of Seagulls hairdo from the last surgery. He laughed and said he would see what he could do.

So Jessie now has nicely shaved head and is awake and alert. Dad and Uncle Steve came up yesterday and Jessie was really happy to see them. I don't know if Jessie or Daddy was more happy. Daddy even brought a cute bunny for Jessie. Dad was able to visit while I was work and said that the nurses said that Jessie might be moving out of the ICU by the end of the week. Yet another step towards the right direction.

So that is it for now. We are so truly grateful and blessed to have the small miracles we have had this month from God. Please keep the positive energy and prayers - we need to keep the faith going to build the momentum! Thank you all for keep us in your thoughts.

"Prayer is asking for rain ~ faith is bringing your umbrella"

Spring 2011 Update

So, it has truly been a while since I have updated this blog. Really the major news to report is about Jessie.

At the beginning of the year, Jessie wasn't able to walk to she was getting around with her wheelchair. Jessie and I would carpool to work to town together since Jessie's car wasn't wheelchair capable for her to drive. So that went on for about a month. Jessie decided to talk to her rehab doctor and see if she could be re-admitted to the in-patient rehab so that she could build the strength she needed to get around better in the wheelchair. Jessie was approved and admitted to rehab the first part of February and spent the month working with the therapist to strengthen her core and arms.

Jessie came home right before her birthday, the first part of March and almost immediately complained of bad headaches. After about a week Jessie went to see her doctor about the headaches and was sent to the ER for observation and testing. It was then found that her tumor had moved to her neck and she had some questionable spots in her brain. This definitely was not the news we were expecting to hear and to say we were sad and devastated is too light of a term. Jessie was re-admitted to the hospital and started agressive treatment for her tumors, which included 5 1/2 weeks of radiation and chemo. Jessie had radiation before so we weren't too concerned about that as we were about the chemo. It is so hard on the body and basically kills everything, good and bad cells. Jessie wasn't able to complete her full schedule of chemo due to low blood counts and a low immune system.

Once all of this was said and done, Jessie went back for a few weeks to rehab and then was released back home the first part of May. However, she came home and a few days later had a major seizure. We were not prepared for that and had to call 911 to get her to the ER. She was at the hospital again for about a week and came home. However, while at the hospital and due to her low immune system, she got shingles. It was horrible to watch her suffer through the shooting pain due to the shingles. It was so bad that she passed out from the pain and we were so concerned already of her high blood pressure that we scared that she might have stroke. So off to the ER again we went. This time, she went to have her heart monitored and then ended up in Oncology, which is weird. I am sure that people that go to the Oncology ward appreciate the doctors and nurses there but with Jessie's case, I was not pleased with the care she received. I feel the attending doctor (who was not anyone we ever dealt with before) didn't listen to our concerns and left the other doctors in the dark. On the last day there, Jessie had a seizure and I explained to the doctor that it wasn't normal for her to have seizures. All he did was give some meds and said that if we take home and she has seizures that we need to contact her doctor to adjust her meds! That was it! No concern about what I said about not having a history of seizures! I ended up calling her neuro-surgeon and got him in the loop.

So home again we go with Jessie (this was last week) and over the weekend she again had a series of seizures. She was having them almost every 10 minutes and then had a major seizure that we had to again call 911. Thank God that the fire station is just around the corner and the firefighters are so caring and professional. It helps to calm us all down when you see they really care and are concerned. So back to the ER we go and now she is in the hospital as they adjust her meds. She is definitely doing a lot better. The doctors are trying to pinpoint the cause, but they do not believe it is tumor growth. They feel it might be residual inflammation caused by the radiation.

So that is pretty much the news for now. Oh, and due to the fact that Jessie was out of work for so long she lost her job at Harrah's. But, it has been a blessing for her. Her position was being elimiated anyways after the summer so she would have had to look for a job. Plus, due to be let go for medical reasons, she can have extended COBRA benefits so that will help us out a lot. Harrah's was an amazing company and with so many people that really cared for her wellbeing. I will always say good things about Harrahs due to the way they have treated Jessie, as an employee, and myself, as her sister, during these trying times. It makes it so nice to have a wonderful employer that tries to work with you during a medical crisis.

I will try to post more as things progress. Take care, thank you for prayers and positive energy and Thank God for all of the blessings and little miracles we have had thus far. We know He is with Jessie during these trying times.

Keepin' it clean....for now!

So I have been working really hard to keep things a bit cleaner or tidy around the house. It has been hard as I have realized that I am a paper-hoarder in the worst case! Cleaned out boxes of stuff that moved to the house with me from the condo and it was old paperwork, statements, check book registers, etc that needed to be shredded! What chaos! When I was cleaning out the bedroom closet Brian said it looked a tornado hit the bedroom! Anyways, a whole two boxes got shredded and there is so much more to go! Even Jessie got on the organization circuit as she is working to get her paperwork together for her taxes (seeing if she can write-off the medical this year) and the paper to be shredded is getting bigger and bigger! I feel like I need a bigger house to store everything!

On the bright side, Brian did build me a little platform for my ATT cable receiver (kitty Belle liked to sit on it during the cold winter mornings and I was worried she would break it) and bedroom TV. I moved the TV closer to the bed and can you believe I can finally read the bottom screen scroll at night on Sportscenter! Amazing what moving it just 2 feet can do! So now that there is an opening on the dresser I bought the big-daddy humidifier from Walgreens and it is amazing. It is ultra-sonic (not heat/steam for humidity) and it just makes that much more comfortable for me. It cost a pretty penny but I think that it will finally give me the edge to get over this lingering cough. The doctor said that I have asthma that is causing the chest distress but I don't know. I feel so much worse using the inhaler that I just suffer through it. I read online that there was a study in Sweden regarding vehicles with studded tires (snow tires) and that it kicks up a lot of road debris and since then I have been driving with the vents closed and I feel so much better when out of the house or office. I think the next thing for me would be to invest in a small Hepa air filter for the use in the bedrooms and I think I will be set.

Moving on to Jessie news: We went to see her radiologist/oncologist regarding the MRIs and craziness with her spine. Dr Morgan (neuro-surgeon) said that the 'growth' may be an additional tumor or cells growing, thus causing the issues that Jessie is having with her legs. She can't walk at all and is pretty much set in her wheelchair. He also said that it could just be radiaion 'fall-out' causing inflamation in her spinal cord. Well we went and saw Dr Dardick and he didn't feel that it is additional turmor cells, which is great news! But he also doesn't know what exactly we are dealing with. Most likely Jessie has some inflamation in her spinal cord (we don't know a cause or reason) and it is something that she can be living with for months or even for the next year. So that kind of sucks but still, no turmor growth! Great news none-the-less. So we just have to keep praying and thinking positive energy to make Jessie better.

I firmly believe (even though I can be a pain in the ass and snippy with her) that Jessie is going to be 100% sometime in the future. It will take a lot to get past this 'relapse' but Jessie is such a fighter and is so much stronger than I could ever imagine! She is my inspiration and I am going to try to live a more calm and stong life this year.....along with a diet :)

Happy New Year 2011!!!

Awe....goodbye to 2010 and hello to 2011! I decided to cook the turkey that Jessie got from Harrah's for her Christmas gift and had our good pal Lacey come and join us for dinner. Here is the turkey with green bean casserole and mashed potatoes ready to go. We also had warm apple cider and sparkling cider.

Here is the complete dinner with homemade cranberry relish, dinner roll. So much fun to have dinner on a cold, snowy night and celebrate with a full tummy!

See Jessie was so excited she jumped to her turkey leg! Hahahaha.....

Wishing everyone a very Happy New Year and let's hope that this new year brings happy news and memories for everyone around the world.

I promise to do better in updating this blog.....

~ Joan

Where did the summer go?

Here we are again, another start to another school year in Reno. It has been a pretty calm and quiet summer. Definitely didn't get a whole lot done at home but at least everyone is doing well and we are all healthy this year (knock on wood). I need to spend more time writing on this blog and updating it with pictures. I wish I was more like that. I see all of my friends and their families with updated blogs so you can see a 'snapshot' of their daily lives. Even though many miles separate us, I still get to see how they are doing and watch their families grow.

My family is still the same: my wonderful husband Brian, my sister Jessie and my cat Belle. The four of us have a great time and truly get along really well. I can't ask for too much more. And we have wonderful friends that visit and hang out with us at home. I am hoping that next spring Brian and I can get a patio/deck done before the summer so I can enjoy my back yard. Right now it is just a jungle of weeds. I really need to work on that and get that tamed down. Will have to get a patio and a lawn put in and some plants and rock and be done with it! We have only been there for 9 years! Projects require money and we never really have any of that just lying around.

Anyways, as we head into fall, I will try my best to take more pictures and try to stop and smell the roses during my weekends.

My baby kitty Belle

So I thought I would post a few pictures of my cat Belle online. She is a pretty black cat with a few white spots of white on her chest and her belly. She is very smart, which sometimes mean she can be a pain in the ass! She rules the house with steel set of claws (which we have to trim pretty regularly).

The first one is her in Brian's arms. She is not happy and trying to get out of there.

The second one is her trying to cool off in the sink. It must be nice during the summer with the cool ceramic on her furry coat....

And the last one is a regular kitty expression of 'What are you looking at?'.

Another year come and gone....

So here I sit in my office, a year ago just gone in a blink. Last year at this time, Jessie was just filing for unemployment and no one knew of the tumor in her spine that would make 2009 one of the worst years for me. Not only did she lose her job (but thank God she kept her COBRA insurance) but within months we would find the tumor in her spine! We just got back from a 12 day cruise with some girlfriends to Mexico. Things were great; we were laughing and having fun.

This time last year I was starting to worry about the budget issues. No one had answers about their job, potential layoffs, salary cuts, etc. And to think that even a year later, I am still stressed out and worried about more budget cuts and lost jobs. Today it sounds like the State government have been able to find ways to cuts some of the expenses and I won't be losing too much more from my salary. It has been a hard year (from last March) and it can only get better in my mind.

Money around the house is going to get tight in the next few months as we figure out what is going to happen to us all. Brian is still with UPS although he is still just part time. It has been a blessing for him to be part time since he is at home with Jessie during the day to take care of her by making her lunch and simple things around the house. He also has taken her to appointments which is helpful too. He said that UPS might be cutting down on hours, which is not a good thing but at least he has his job and his benefits. That is always the optomistic side of this whole thing. Jessie is still looking for a job and fighting for her unemployment. Hopefully by the end of March she will see if her appeal for unemployment went through. I don't see why it wouldn't but I am not the decision maker with that. She keeps plugging away, looking for a job and I hope that something great comes up. She deserves an awesome job considering all of the craziness she has gone through.

This week Jessie has a follow up MRI and then it is off to Dr Morgan to see what is going on with the tumor. We feel that it will be good news since she has been doing so well! Have to keep the happy and positive thoughts going!