November 25th

Its been 15 days since Cassandra's death. People have been asking me what I will do with the blog now that she is gone. This will be the final entry. I thought for a while about what I could do to keep it going but this was Cassandra's blog and she wanted it to be a place where other cancer patients could go so they could see they weren't alone. She wanted to make people laugh, inform and even though it wasn't her goal, she inspired a lot of people.

Elliot and I are doing well. We are spending a lot of time with family. Elliot is never one to want to sit still long so always doing something is good with him. As per orders from Cassandra, we put up our Christmas decorations with lots of family. Everyone had a good time. Elliot enjoyed putting ornaments on the tree.

Its hard to rap up this entire blog with a single paragraph. It doesn't seem like a fitting end. Just like Cassandra's life I feel like it was cut way to short. There were so many things she wanted to do but she did manage to check off her biggest request in her life. She wanted to be a stay at home mom and raise her family. It may seem like a simple way of life but its what she wanted. I am sure that is a testament to what she thought of her own mother and how she wanted to be just like her.

Altogether, Cassandra and I were married for 3 years 3 months and 5 days. We dated for a little over a year before that. For over 4 years we never spent a day apart. While we were married the only nights we were apart were nights in the hospital or hospice home. Cassandra and I also worked at some of the same places. We car pooled together, ate lunch together, and drove home together. I don't know the proper analogy to put it in perspective of lose but Cassandra and I nearly spent 24 hours a day together.

The only words I can choose to describe her death is that I am crushed. I think it makes it worse that we all thought she was getting better. I know I am not the only one of her family still feeling the lose. I think we are all still struggling with her being gone. I know that at times I feel like I can round the corner into the bedroom and she will be there planning a birthday for Elliot that isn't even remotely close yet. But for right now, we are all still in mourning and will be for sometime. I know that time will heal all wounds but its going to be a while.

As previously mentioned, I have an awesome family and my awesome sister got some pictures of Elliot done with his cousins. Cassandra would have liked it to end the blog with a very cute picture of Elliot.

My Speech at Service

I thought I would tell the story of how we met because to me, it’s one of the best examples of Cassandra’s personality. Cassandra and I met after high school in 2003 when we had both entered flight school to become pilots. Along with the many flight classes we had to take we also had general elective classes just like any college major. So we had a bright and early 7:30 am English class.

Now, if she was telling you the story this is the part where she would tell you that after getting out of her car she slipped and fell into a mud puddle in the parking lot. So for her, the first day of college wasn’t going all that well. But to be honest with all of you, I never noticed the mud. She was the most beautiful woman I had ever seen and she just so happened to walk into my English class. I remember that I was sitting near the front of the class and Cassandra sat behind me near the middle. The professor wanted our small class of about 20 to introduce ourselves since it was the first day.

 To give a little back story to myself at the time, I was lucky enough to start flying lessons just before my 16^th birthday. I was pretty proud of that fact and by the time I went to flight school I was way ahead of most of the students. So when I see a chance to impress the gorgeous girl who just walked in I took it. When it was my turn to introduce myself I stood up and said “Hi, my name is Eric. I am from Monett Missouri and I’m a pilot and I am here to complete my training and become a professional pilot.” And to finish it off, I’m not so sure I didn’t toss a wink and a single gun her way just for added affect.

The professor exclaimed “Wow, I don’t think I have had a pilot before, how exciting!” in my head I reclined in my chair cool as a cucumber and watched the women fawn over me, including Cassandra, as I’m sure I said “I know, it IS exciting.” Little did I know at the time that someone had told Cassandra that women couldn’t be good pilots. So for her, an arrogant guy standing up and bragging about it probably didn’t sit well with her.

I couldn’t wait for Cassandra to introduce herself. I wanted to know her name. After most of the class went Cassandra finally stood up. She smiled at me as she started to speak “Hi, my name is Cassie, I am from Springdale, AR and I am also training to become a pilot. I’m just not so cocky about it.”

That was Cassandra, there was nobody like her. She had the perfect mix of stubbornness and drive that made anything possible for her. A couple of days before Cassandra passed I was sitting next to her bed. She could still talk at this point but most of the time she didn’t recognize me or her family. She was laying there and I was holding her hand and suddenly she opened her eyes and looked at me and said “Hey, don’t get any ideas, I am married to a great guy.” I told her I wouldn’t think of it. She then started to hold my hand like we were going to arm wrestle. I asked her “are we going to arm wrestle? I think you are stronger than me.” She smiled at me and said “I am strong because I have to be, see, I have cancer and if I am not strong I don’t get to see my Elliot or my husband.” She fought every day to see the ones she loved. It was a battle every day and she did it smiling. So, in the end she went quickly because she had given everything. I know now that all of us have to be strong and go on without her. For me, I have to go on and raise my son the way she would have wanted. In true Cassandra form her final wishes are a pretty short and concise list of dos and don’ts. However, her Christmas list that details everything she did for Elliot is 2 pages long. I have some impossibly big shoes to fill without her here but I know I have the support of my and her family. Ill finish up by quoting Cassandra from one of her writings on her blog. “Today is for processing, tomorrow is for getting things done.” And it really is for getting things done because I have a 2 page list of Christmas preparations to start knocking out.

This morning at 2:30 AM Cassandra passed peacefully.

Eric

Saturday Update

One of the reasons Cassandra started this blog was because she couldn't find anything on the internet that told the cold hard truth on what is occurring during the cancer experience. She wanted other cancer patients to be able to find something in clear, understandable English so there were no surprises for other people. I am trying to keep that going as I am writing her blog for her. With that in mind I will talk about Cassandra now.

Cassandra's condition has not really improved. Its becoming more apparent to us that we are in the finally days. Cassandra is very confused, can barely talk and is starting to experience some pain. We have started her back on pain meds to make her more comfortable. Cassandra is not taking in enough fluids and while you can go around 30-40 days without eating, without regular fluids you can only last 7-10 days. What this means is her pulse is very high and her breathing rate has increased. All of this points to kidney failure within the next week or two. According to the doctors, around 70% of the patients in hospice pass this way. She still has strokes and seizures to worry about and those can happen at anytime but for right now kidney failure is what we are all worried about. All of this could be solved with an IV of fluid but the problem is that she would continue in her current state for 30-40 days.

 Last time we left hospice Cassandra was very much herself. She would joke with all of us, tell stories and could be clearly understood. Finding the drug we did gave her a fighting chance. Now, even if there was a drug that could help her, I don't know if we would use it. Cassandra's brain has battled for so long that quality of life is now a real issue. 

So for right now we are spending as much time as possible with her. Cherishing each little conversation we can get and every smile.

Eric

Back in Hospice Home

Doctors agree that Cassandra suffered a major stroke. We also had an MRI done yesterday. Cassandra's cancer has rapidly grown across her entire brain. With the stroke and the cancer Cassandra may never fully come back to us. Right now she is in semi-conscious state. She mostly moves her right arm and legs and then occasionally says sentences that don't make much sense. We aren't really sure if she is even able to see. Her eyes don't focus on anything and she doesn't really recognize anyone. She has been struggling to hear for the past few weeks as well and we don't know if she can hear us.

Its hard to say what will happen. Cassandra has always fought hard but at this point I feel like her spirit is willing but her body is failing. Its been 2 years of constant fighting and I think she is too tired this time. This hit so suddenly and was so debilitating that we are all finding it hard to imagine her fighting though. Whenever you come close to her bed she does reach out with her hand and will hold hands for a bit. She will squeeze your hand a couple of times almost like she knows what's happening.

Nobody knows what timeline we have. We will know after we see a trend of her health. Her vital signs are strong right now so the doctor thinks days not hours. However, Cassandra could suffer another major stroke or seizure at anytime.

I thought I would end this post on a good note. The new drug we went on gave us around 60 more days before we came back to hospice. One of the things Cassandra got to do was see Elliot go trick or treating for Halloween. This is Elliot dressed as Boba Fett from Star Wars.



 

Whenever we watched the movie he always like Boba Fett for some reason so we got him a little doll to sleep with. So when Halloween came around there was only one clear choice for a costume.

 

 

I'll keep you all updated.

Eric

 



Major Setback

Yesterday around 1:00 PM Cassandra suffered what we think was a major stroke. She was unresponsive for about 2 hours and now has very limited motor and communication skills. For the most part she does not recognize anyone and that is including me. Since waking up this morning she showed some very minor improvements but is still very far from where she was 24 hours ago.

We really don't know what this means for the future. We are still waiting to see if she recovers from this stroke like she did the last. If she doesn't improve this likely means we will be placed on hospice again and treatments will stop.

I will keep everyone updated as much as I can.

Eric

Good Pain

Hello everyone! Once again, I apologize for not writing more regularly. The Schmit family has some busy days and days/weeks fly by before we know it. Cassandra is doing great. I am happy to report she is completely off the steroids and she has not had a pain pill in 2 days. Cassandra's days are still spent mostly in bed or the living room recliner because the steroid reduction is robbing her energy. However, she is getting more active!

Cassandra's main complaints now are being tired and soreness. She is having to build all of her muscle again which means lots of little rehab sessions. She said it reminds her of running a long distance and waking up the next day. So we call it a good pain.

Cassandra's third treatment is coming up next week. Once again, the doctors are amazed by her recovery. We think that since she has little to no pain in her head and she is on no steroids that there is a possibility Cassandra could be cancer free right now. We wont know till after the 4th treatment and we do a scan but everything right now points to Cassandra heading towards a remission. This would be her third remission in 2 years. HOPEFULLY this one will stick!

Elliot is also doing well. Everyday he learns more words and is helping around the house. He is a great little helper. Most days he helps bring Mom snacks or extra blankets. He loves helping Mom and it makes his day to be apart of everything.

Thank you everyone for your continued messages of support!
Eric

On the Mend

Its been a bit since our last post. Cassandra had her second treatment without any problems. Tomorrow we see our oncologist for her mid treatment review. It was at this point where we were going to decide if she needed scans or not. That fact that Cassandra continues to get better everyday means that we will hold off on scans until all 4 treatments are completed. So tomorrow should be a pleasant "Hello, how ya doing?" and back home.

As far as Cassandra goes, she is still doing amazing. We have continued to lower her steroids so that she can get some strength back in her legs. Its still early yet but she is seeing some improvement. Her pains meds are strictly 12 hour extended relief drugs with nothing needed in between. Her seizures have gone down to about one a week. Her spikes of pain are also about one a week. She still spends most of her days in bed watching TV and trying her hardest to read. Cassandra used to be an avid reader so this is the hardest thing for her.

Cassandra has been talking about how much she is looking forward to the holidays and seeing all her family for Thanksgiving and Christmas. Her outlook is pretty bright these days.

Eric

Some Good Days and Some Bad

Since our last post Cassandra has had some very good days. Days where she almost needs zero pain meds. For Cassandra this means more days playing with Elliot and being involved in day to day activities. Cassandra spends most of her time in bed but when she is feeling good that means she can move to the living room and enjoy being apart of Elliot and I's chaos.

There have been some bad days. A couple of days ago Cassandra has a seizure at 6:00 AM and was not able to speak for 15 hours. It wasn't until the next morning that she was back to 100% on speaking abilities. There have also been some intense spikes of pain. The pain was so intense I had to give her syringes of pain meds just to keep it under control.

Today is one of the good days. Cassandra spent the day doing puzzles with Elliot and playing with trucks in bed. She also spent some time reading more of your comments on her own and although it took a long time she was able to get through them but not without some tears. She really appreciates your words of encouragement.

Tomorrow is her second treatment. With as good as Cassandra is doing, we are 100% sure the treatment is working now. In the words of her oncologist "she wouldn't be here right now if it wasn't working." We are very lucky that she is reacting well and we are hoping with every treatment it will get better. For Cassandra the trip tomorrow will be very tiring but its worth it.

Eric

A Big Thank You to All You Bikers

As most of you know we have been battling this cancer for 2 years. Before that Cassandra was pregnant with Elliot. So for about 2 years and 9 months Cassandra has not felt normal. It is starting to take a toll on her. Even though we are lowering her pain meds she still has lingering pain here and there as well as occasional spikes of pain. Keytruda also has side effects. One of them being joint pain which Cassandra is now experiencing. We are also lowering the steroids which saps her energy. In Cassandra's own words, she is tired of being tired and in pain.

Even with all this pain Cassandra wants to push herself to become more independent. Lowering her steroids will go a long way to helping her walk again. October 7th is her next treatment. We are hoping that with every treatment she will see better or faster results.

Bikes, Blues, and BBQ was held this week. Some of the people at JB Hunt held a poker run for Cassandra. Altogether, they raised $3500 for us. That money and other donations to our gofundme site have really gone a long way to helping us pay some of our medical debt. We cannot thank you all enough for everything you have done.

Its been a while since we have posted any pictures. Here is Cassandra getting some quality time with Little E before bedtime.

Eric

Doctor Day

Today we saw the doctor. Im on a new drug for the tumors in my head. Ive had dizzy brain, and even 3 seizures or so. Im blessed that my parents and hubby are here to help. Ive also fallen a few times. Im lucky to say Ive been caught, so I haven't fallen too hard.

I have more IV treatment in 2 weeks. There aren't many side effects so thats good I am back in a wheelchair, and need help even getting on and off the potty. (which I hate). Sorry I haven't written, Im back to having issues with my words and sight. Im pretty much blind again. :(

So put it down, Im dependent on other people and I appreciate you're support.

thanks- Cassandra

After our talk with the doctor it was agreed that the drug, Keytruda, seems to be working. Cassandra is now off the pain patch and has been requiring less pain meds.  The only real question now is how far the drug will go. It has the possibility to completely eliminate the cancer in her brain or just beat it back for a few weeks. We won't know for a little while. If everything continues as planned we will get scans after all 4 treatments.

So for now our goal is to continue reducing pain meds and reducing the steroids. Once the steroids are gone we can work on getting her out of the wheelchair.

Eric

Lazy Sunday

Cassandra is doing pretty good lately. We have been lowering her pain meds slowly over the past few days and she is having less sudden spikes of pain. We always keep liquid morphine on hand to be able to deliver very fast pain relief if she ever gets one of these spikes and we have used very little lately.

Cassandra spends most of her days in our bedroom resting because her legs are still not 100%. I wouldn't even say they are 30%. She at times lacks strength to hold herself up and her balance is not great. She has had a couple of falls. Sometimes it is hard for her to request help when we are in the other room because she still thinks she can do everything she wants. So this has, at times, contributed to her falling.

The one big change lately is that Cassandra is now experiencing seizures fairly regularly. In the past 24 hours she has had two that we know of and one that I suspect happened in the middle of the night. We talked with our Oncologist about this in our last visit and he told us anytime there is changes in the brain there is always a chance for a seizure. What we don't know is what type of change is happening in her brain. It could be the cancer is progressing or it could be in retreat. I think that the cancer is in retreat because she continues to do better overall especially in regards to pain.

We see our Oncologist on Tuesday for a checkup and labs to make sure everything is going smoothly. On Tuesday it will have been one week since we got the Keytruda and over the next few weeks we can start to hopefully see more improvement.

Cassandra is blown away by all of your comments. We read all of them to her and at times she tears up from all the support. We really appreciate everything. She continues to be positive about the treatment and knows she still has a long road ahead of her.

Thank you all again
Eric

The New Plan

Today we saw our oncologist. The last time we saw him was in the hospice home and he said there was nothing more he could do. Today, we were all smiles. He was very excited about the new drug and said "You couldn't make a better drug for Cassandra." After a quick visit where he asked Cassandra how she felt, we went up to the chemo room to get her IV treatment. (Her new drug is not chemo, that's just what they call the room.)

The new plan is to get 2 treatments of Keytruda and see how Cassandra is feeling. If she is seeing signs of improvement, then we continue with the last 2 treatments. After all 4 treatments we will get a scan to see what is happening. If Cassandra has not improved after 2 treatments, we will then get a scan to see if the drug is working. If her cancer has progressed, we will stop the treatments since the drug isn't working.

The good news is we should find out pretty quick what is happening. In the next couple of weeks I fully expect Cassandra to have less pain and pressure in her head. After she starts feeling some pain relief we can start to work on other things like getting her walking and reading again.

Cassandra has already stated some of the things she wants to do when she feels better. She continues to stay very positive about the future.

Thank you all for your continued support!
Eric

Doctor Today

Cassandra has been in a lot of pain lately. I am having to give her more and more pain meds just to keep it under control. Today she will start her treatment after we visit the oncologist. Hopefully the meds work quick and she can start to have some relief. We dont know how quickly the new drug will work. This drug is so new not much is really known. What we do know about the drug is that she will get 4 treatments, spread out through 12 weeks.

I realize one of the reasons my wife started the blog was to brag about our son Elliot. Elliot is doing well, he has spent a lot of time with Aunts, Uncles and Grandparents. Everyday he learns a bunch of new words and its fun to see what he does next. He is a typical energetic 2 year old who keeps us all laughing.

I know the post is short today but I will write more after we return from the doctor.
Eric

CT PET Scan Results

Cassandra has no cancer from the neck down. While we were not overly concerned with cancer in her body, its good to have confirmation that her body is still holding the cancer at bay. The main purpose of the PET scan was to get all the information we could before we start her new treatment. If everything goes well, her treatment will start on Tuesday. From everything I have read on Keytruda, she should start to see some results within weeks.

Cassandra is doing pretty good considering all she has been though. She still has pain in her head with occasional intense pain. At least once a day I am having to give her increased pain meds. She is standing and moving better. She pushes herself everyday, sometimes a little to much. In her eyes, she is doing well enough to take trips out to Wal-Mart or Target and do some shopping. Although she is really doing better each day we have to convince her to stay home. This is no small feet as anyone who knows Cassandra knows she is a little stubborn. We can't fault her to much since its the same stubbornness that has got her this far.

So right now we are just laying low at home. Cassandra had two events in two weeks and we are trying to keep a potential third one from happening.

Eric

The past 24 hours....

Yesterday we got home around 1:00 pm. Cassandra reported very little pain and was very excited to be home. She had a good dinner and slept very well throughout the night. She woke up this morning with little to no pain but said she did feel pressure. At 7:30 am today Cassandra became unresponsive as she was sitting in a reclining chair in the living room. For 30 minutes, Cassandra's Mother and I kept her breathing and tried to wake her up. Her pulse dropped to 38 and for a while we all thought the worst. Cassandra finally started to come out of it at about 8:30 am. She opened her eyes and moved her hands and feet. The hospice nurse came and after talking with the doctors it was decided she had a stroke.

Over the past few hours Cassandra has been recovering from the stroke. She is talking, eating and drinking. She has even stood up to go to the bathroom with help walking. She is doing much better.

During all the chaos of trying to help Cassandra we were also informed that the new drug, Keytruda, has become available for her. Our oncology team is ordering it as we speak and ordering a set of CT PET scans for tomorrow. If there is anything that can potentially cure Cassandra or give her more time its this drug. This drug has the unique ability to fight the cancer everywhere in her body, no matter how small it is. Tumors can shrink or disappear and her cancer may have a chance of permanently going into remission.

As you can tell the past 24 hours have had a lot of ups and downs. Our main goal right now is to keep Cassandra recovering so we can get the scans tomorrow and start her new treatment.

I want to thank the JB Hunt Maintenance crew for the card yesterday. One of comments written on the card was "whenever you run out of rope, tie a knot and hang on" Cassandra has definitely tied her knot. Thanks again.

Eric

Lots of sleep and cookies...

The doctors continue to be amazed at how Cassandra has recovered from what seemed like the end only a week ago. We are still lowering her pain meds by increasing the frequency and decreasing the quantity. We are aiming to get her home on either Monday or Tuesday. All of this is contingent on her continuing to do well and the spikes of pain to become less frequent.

Cassandra still has pain as her medical condition has not improved any. That is to say she still has terminal cancer in the lining of her brain. The drugs that Cassandra used in the past, Immunotherapy, still have a chance of fighting the cancer. Also, we are chasing down any leads on any new drugs as they become available. One drug, Keytruda, was just approved by the FDA. It seems perfect for Cassandra but some more research needs to be done to see if she is a viable candidate for it.

Cassandra continues to do well in every way imaginable. Most of our time is spent eating cookies, watching TV and catching up on sleep. Also, many discussions on which skittles candy is the best and the merits of each one. Overwhelming support for the red and orange skittles while yellow is much loathed.

Our family is still blown away by all the support we have received. We cannot thank you all enough for your donations and words of support.

Eric

MRI Results

Our Oncologist stopped by Cassandra's room last night to give us the results. Unfortunately, her cancer cannot be treated and she will remain on hospice. Cassandra has a condition called leptomeningeal  disease. This basically means she has tumors in the lining of her brain and its very hard to treat. Because of their placement, our oncologist said it would not improve the quality or length of her life to do anything about them.

The good news is she did not have any bleeding or giant new tumors inside her brain. The reason for her pain is because she has cancer cells floating in the tissue and fluid that protect her brain and spinal cord. Sometimes these cancer cells will collect on a spot and cause her severe pain.

So our new plan is to try to get Cassandra back home. We are starting the pain patch today. We have to start it on low doses and slowly work up to the dose she will need to cover her pain needs. This may take a few days but I feel pretty confident that we can get her home by the weekend if she continues to do well.

Overall, this is pretty crushing news but we are trying to look at any silver lining we can. She is still doing well but ultimately there is a clock ticking we just don't know how long she has. As long as she continues to get stronger we know she has more time.

Eric

MRI Today

Today at 4:00 PM Cassandra will have an MRI. We wont get the results till tomorrow morning. If her results come back and her cancer hasn't spread she will be sent to Washington Regional for treatment. We don't know the treatment yet, most likely some surgery to get immediate results. If her scans come back that her cancer has spread then she will remain in hospice.

Cassandra continues to do well. She eats more everyday and is beginning to stand and walk more. Sometimes its all we can do to keep her in the bed. She wants to be active and always wants to push herself. She still has pain in her head and still complains about grogginess from the drugs but overall her condition is improving everyday.

Sorry this is a short post but right now there isn't much to say until we get the results back. Thanks for your continued thoughts and prayers.

Eric

Hope

Everyday Cassandra continues to improve. Her speech is getting faster and clearer. She ate some cookies and chicken last night. This morning she had eggs, biscuit and strawberries. She is more active, standing and taking wheelchair rides around the hospice home. Her top three complaints are her back (from being in bed so long), her grogginess (from the drugs), and her headaches. We have continued the same scheduled amount of painkillers she has been on for 3 days to make sure that her condition doesn't suddenly worsen.

The really good news is that Cassandra maybe able to go home soon. After talking with our Oncologist and the hospice doctor, a plan has been created to slowly introduce a pain patch. Using the pain patch will allow us to take her home since currently she is getting injections of drugs at the hospice home. Once we get her home we are going to have a MRI done to see what is going on in her brain. The last MRI we had showed a subtle area of development in her left frontal lobe and that is what is causing everything that is happening right now. My oncologist has a hunch that Cassandra had a "event". This event could have been a tumor rapidly growing and then exploding or a blood vessel in the brain rupturing and blood was leaking and now healed. If we get an MRI and it shows that she only has one area that is affected we can actively work to start treating the problem. If we get the MRI and there are multiple areas of development we will have to remain on hospice and it will only be a matter of time.

Cassandra continues to defy the doctors, odds, and show us what a truly courageous and strong fighter she is. I don't see a lot of tears in her room anymore, instead I see a lot of smiles. We still are against the odds and I have to say that she could still start going downhill at any moment but we are all running on the belief that she can continue to fight this.

Eric

Sunday Update

The past few days have been filled with ups and downs. The doctors have finally zoned in on what pain meds work for Cassandra. She has been doing better overall. Yesterday she opened her eyes and started talking again. Some of the talking is about things she needs to do like laundry or cleaning. Other times she says things like pass the parmesan cheese. Most of what she says you can understand and is relevant to what is happening. She tells us that she loves us, worries about Elliot or what he is doing. She has been getting long periods of sleep, waking up afterwards says "I haven't slept that long in a very long time." She has been eating pudding and ice chips along with drinking orange juice.

She is still in pain and they are giving her a lot of pain meds to control it. Last night they had to give her meds to sedate her because she wanted to get out of bed all night long. The doctor was amazed at how much it took to finally get her to sleep. I talked with the doctor this morning and asked if she was getting better. The doctor said no, but anything is possible. The doctor was quick to point out that she is young and that is why we are seeing her talk, sit up and drink fluids.

The doctor is certain that she will remain in hospice and wont be going home. I know what she says is probably true but I do have a little hope in the gains she has made over 2 days. I know that all of this could be over in a matter of hours and every minute we have with her is a gift but I still have hope. Her cancer has done crazy stuff before like the first remission she had.

There is only one thing I am certain of, Cassandra is fighting to the very end and anyone that knows her wouldn't expect anything different.


Eric

Update

Yesterday was a tough day. Cassandra woke up and was feeling pretty good. Her pain was at the lowest it had been for weeks. By 9 am pain started to come back. I tried to give her increased meds early to fight it off but by 10 am we had admitted her to the hospice facility.

The doctors spent most of the day trying to get her pain under control. Around 5 pm they finally got her to sleep for a couple of hours. She really didn't get much sleep until 3:30 this morning. She has been asleep now for about 8 hours.

When she is awake she yells out in pain. She really doesn't know where she is or what doctors or nurses are doing. She fights with the staff because of her pain levels and doesn't want to be touched. We talked with the doctor this morning and it was indicated to us that the cancer is now progressing all over her brain. This is causing the increased pressure and severe pain. They are trying to reduce swelling with steroids but the doctor told us this seems like the final stages. He is pretty certain this will not turn around at this point and she wont be returning home.

Please continue your thoughts and prayers.

Eric

Admitted

This post is being updated by her dad. Her challenge continues, it has been a few rough days. Sleep is short, more like naps through the day and night. Eric is trying to keep the meds enough to control the pain but still allow her to function. The pain just continues to come back it seems stronger and last longer before the meds can get it under control. She is having all the symptoms expected for a person with brain tumors. She gave us a real scare Tuesday morning about 2:30am when she had a seizure, hard to breathe,  face and arms numb, speech was bad, but it passed leaving lots of pain to get under control.
Admission to the Hospice care center just happened 2 hours ago, they want to get the pain under control instead of the spikes she has been having. We don't know if this will be a short stay or not at this time. The doctor will review her condition early this afternoon,  then we hope to know more.
I can tell you that for the last few days when the pain is being controlled that she is not one to sit, she is up doing something or playing with Elliot.
Eric is being the great husband he is.
Sorry this is not the good writing you are used to reading from her telling her story. We asked that you continue to lift her up in your prayers.

Update

Every day is a challenge. I struggle to communicate. I see hallucinations. I have a lot of pain most days. I don't really sleep at night.  To cope with all this and to help with my anxiety, I clean. Lots of cleaning.  I try to do small activities to keep my mind off things. Cleaning allows me to do small things that help me feel productive and like I accomplished something during the day. Since I am on steroids, I have been trying to workout more and more since they are the meds that put me in a wheelchair last time. The steroids rob muscle strength from my arms and legs. They also interrupt my sleep cycle. 

We saw the hospice nurse recently and she increased my morphine that I am on. She told me that brain tumors are notorious for the pain they cause. Its something I am going to have to deal with for the rest of my life, however long that is. She also told us the timeline we are looking at. "Weeks, not months" is her estimate. She bases this on the fact that only a few weeks ago I was in relative good health. Then the cancer came roaring back. Anything could happen between now and weeks from now. Everyone's cancer is different. The things I have on my side are my age and that my cancer has done odd things in the past. In the past, I have had tumors grow then stop suddenly. There is a chance that what is going on in my brain could do that now but the odds are of course against us. 

No matter what is happening tumor wise I am experiencing something that we really never thought we would have to deal with. My oncologist told us a long time ago that when we got whole brain radiation treatment that this would cause problems for me a year to two years in the future. At the time, we said we would do anything to make it that long. Now that we are here, I am having cognitive slow down. The basics of it are the increased confusion after my brain has been battling cancer for 2 years. At the time we really didn't have a choice, I was given less than 30 days and here I am today. It seems like it was the right thing to do.

Eric and I are going to try to post more often. Right now our lives are spent trying to enjoy each day and play with our little boy. We have been enjoying the simple things like playing with Elliot's new Hot Wheels cars. Elliot loves them and takes them with him everywhere he goes.

I want to thank everyone that has donated to our website www.gofundme.com/cassvscancer . We are completely blown away by the amount donated. We really can't thank you all enough for the support we have received. If there is something positive to come from all of this, it has made us very aware of our friends and family and how much we love them all. We also can't help but see all the people that don't even know us but are helping us. Words can't describe how thankful we are to all of you.

Back on Hospice

Today we got to meet my hospice nurse again. It was bitter sweet. We like our hospice nurse but nobody really wants to have to know one. If you do have to know one, ours is the one to get. She is very understanding about the situation and works really hard to get my pain in check.

For those out there who are curious as to the whole process of getting on hospice care its pretty simple. Your doctor decides there is nothing else he can do and makes a phone call to a hospice care facility. They usually call you the same day and set up a same day meeting to get you admitted. A nurse comes and explains that "this is hospice, we don't cure you, we make you comfortable". There is nothing quite like signing a do not resuscitate order in front of your mother and husband. Of course, I am lucky enough that this is my second time signing one. Most people only get to sign one. The first one I signed was ceremoniously destroyed by Eric and I when my tumors began to shrink. I hope we get the same opportunity to do it again.

We talked at length today with my nurse about what is happening. My headaches are worse, my arms are going numb for long periods of time more often and sometimes just can't speak at all. Slurring my words or just not being able to find words. It is very frustrating. There are times when I can forget about the cancer like last night. Eric's parents and brother came over as well as my mom to enjoy some dinner. I was amazed at how well I felt. For about an hour I almost felt normal. When they left I went to bed and my arms immediately went numb which brought me right back to reality.

Our hospice nurse thinks that I am having some form of seizures and that is causing my speech difficulty. She also said that the problems will only get worse. The disease in my brain is going to progress and nothing can really stop it. To say that I am scarred would be the understatement of the year. We have fought this thing for 2 years now and I feel like it may have the upper hand now.

It has become very difficult to continue typing on this blog because of my reading and speech problems. For the past few posts Eric has had to transcribe and help me decide what it is I am trying to say. My thoughts are not always clear enough to get my point across. We decided that I will continue to have him transcribe my posts until it becomes to much. Eric will then take over the blog to keep everyone up to date on what is going on.

For now, that is all I have. I don't mean to end the post on a downer but sometimes, when you are talking about something like this, its the only way you can end it.

Some Good News...

We got the information back on my newest set of scans. There is no evidence of cancer below my neck. While that is good news it really doesn't matter now that it is growing again in my brain. Currently, my doctor has his research team looking for any clinical trial that could help. The problem is that when you have cancer in the brain there aren't that many trials available. Most cancer trials want some big tumors in the body to easily see if their drugs are working. Once its in your brain it is usually to late at that point to do anything. The other problem I have is that it is in the lining of my brain. There are even fewer trials for that. My hope for any trial is dwindling which means that when I see the doctor again on Tuesday, I will most likely hear the words hospice again.

The good news on that is that we would receive the same hospice nurse we did last time and we liked her. She also lives close by to us.

As for how I'm feeling lately, horrible. I wake up in the morning with massive headaches that rival the headache I received when my first tumor burst 2 years ago. Eric has to keep me thoroughly drugged to even have a normal day and I am back on steroids to reduce the swelling in my brain. I am always in pain no matter what drugs I take but usually I can get it down to a manageable level. There are times that the only thing I can do is lay in bed and cry because the drugs aren't working fast enough or its just a really bad headache.

If the headaches weren't bad enough, I am also having trouble reading and speaking. Sometimes I cant get the right words out when talking. I can't end sentences and can't answer questions sometimes. My reading has also been getting worse. While my reading was never great after the first tumor I was managing to get better. Eric has been pushing me to read more books even though it takes me a long time to read one page or even read a children book to Elliot. Now my reading is almost impossible.

I want to thank everyone for the words of support in comments or private messages to me. Some of you have asked if we had a donation site. We finally decided to set one up after the many requests to want to help. We appreciate everyone's support. You can find it at  www.gofundme.com/cassvscancer

My fight continues

Things you don't want to hear on your wedding anniversary: There are signs of cancer back. We will likely put you on hospice by the end of the week.

The mind splitting headaches are right where the cancer is. They out me on steroids to try to help the pain. I will have more scans on friday. Meanwhile, the research/ trial team is looking to see if there are any new drug trials I might qualify for. Ultimately, if there isn't a trial found I get to welcome my favorite hospice back.

Thats all I have in me to write at this time. Honestly they have me on pain drugs Im a bit loopy. Its the only thing right now that helps dull my head. (it sorta feels like having your head explode over and over). I will keep everyone updated as we continue on our journey.

Whats up?

Sorry for the lack of posts. I haven't been feeling great. My headaches have increased in pain level, so Ive been sleeping a lot. The pain meds make me a bit loopy. On a bright note: The post surgery diet has helped me figure out the answer to less tummy issues. My tummy apparently responded well to virtually no bread, and a soft diet. Ive felt better in this last week (tummy wise) than I have in a long time.

In other news: We moved Elliot to a 'big boy' bed! No more crib. He's responded better than I thought. He pretty well stays in bed until we come get him. It did make me tear up a bit. The thought my baby is growing up. He's also been talking up a storm lately. He's also learned how to help us with laundry. He helps us put it in (front load) and even carry the laundry baskets. Its crazy how much this kiddo can do.

On a brighter note, I have scans on the 18th of August. I think we are all holding our breath to make sure Im still cancer free.

Minor surgery today...

I broke a tooth two weeks ago. I was simply chewing on a hard candy and it broke. Way to go me!? I knew that dental issues, and weak bones are a side effect of cancer. (all the radiation to my head, throat, then the different meds Im on). Heck, they even gave me a shot for brittle bones!

The dentist had bad and good news. The good news? All of my other teeth are fine. Bad news? The broken tooth was in such bad shape it couldn't be saved. Not only that, but it would require an oral surgeon.

Today I had oral surgery. They went in and pulled my tooth. After that, they proceeded to somehow make a bone graft to make me a new tooth. (cool huh??) So now I wait 2 months to heal, then go back in for them to finish my new tooth. I honestly don't get how they are doing it. All I know is Im lucky it was one of my back teeth. I can smile and no one can tell its even missing.

So overall, today Im in a lot of pain. I was told to spend the rest of the day on bed rest, but it just about drove me nuts. I managed to get some laundry folded from bed. On a good note: No other issues/ side effects today. Im feeling pretty good on my targeted therapy. Yay for good cancer drug days.

Catching up

Ive tried to write many different blog posts these past few days. Nothing has sounded 'right' to put down. Ive been enjoying the cooler weather. Who would have thought 60's in July!? My time has been filled with housework, playing with Elliot, and all the other normal things.

My health is the same. Still feeling like I have cancer. Still on the targeted therapy drugs. Still dealing with side effects. Its a never ending battle. I won this past round, but still dealing with the battle wounds. :)

The newest thing Im doing? Restarting my physical therapy at home. (no therapist, just going back to the regimen) My legs are still weak. So Im tracking my steps for the day, and trying to add in weights. My goal is to be able to catch a 2 yr old. lol. I can't run yet as my legs just can't seem to take it. So we start with walking and will move slowly to a faster pace. Keep in mind, Im not doing this to loose weight. I don't have any more weight to loose. Im already happy with my weight, and struggle to keep it from dropping. All I want is to be strong enough to keep up with my family. Right now even a trip shopping leaves me tired the rest of the day. So its not a crazy idea.

-Cassandra

Pools and such

Ive been pretty boring the past few days. Ive either been at home or at the pool with my family. Im more sensitive to the heat on my meds, so the pool is a challenge. I struggle with every fiber of my being to keep the contents of my stomach on the inside vs outside. Every time thinking Im out here at least trying to live life. This is as "normal" as Im going to get.

In other news: We're working on trip ideas for a mini vacay this fall. Im hoping the weather will be cooler. I want to go to the diamond field in southern Arkansas. You can dig and try to find diamonds. Many are found each year. You even get to keep what you find. I think it would be fun. Have Elliots first camping trip etc. For some reason Ive had my heart set on going for a while. I just know that I can't  go until the weather cools off.  Its going to be a long summer…...

Uncharted Territory. Remission further explained.

So Im officially in remission. Thanks to my 'targeted therapy' / Chemo treatments. As Ive said before Im on 2 different therapy drugs. My doctor says I will remain on these drugs as long as they are working, and my body can tolerate it. One patient was on them for 14 years before they no longer worked. So I get the pleasure of staying on these drugs for the foreseeable future. I can't complain, as they have saved my life so far.

We are now in uncharted territory. My doctor says its a miracle. He keeps telling me my case is "seminar worthy". It is very rare that a patient with metastatic melanoma in the brain to survive this long. Or even have all the 9+ brain tumors disappear. I am pretty much the test subject for my doctor. Im still struggling with tolerating the therapy. So any progress I make is passed on to other patients. Any of the ways I find to help with my pain, or 'issues' they pass on. Im glad to be of help, but Im still figuring it all out.

My side effects honestly just suck. I still have tummy issues, and massive headaches daily. (thanks to scar tissue in my brain) The therapy makes me heat/cold intolerant. Too hot? I puke, and it doesn't take much. That said, I struggle at keeping from loosing too much weight. Ive been tasked with staying steady. (failing at the moment) Our game now to figure out how to solve my tummy problems.

While the remission is good news, Im very hesitant to be happy. The last time they said the words "you're in remission" was last year. The next time they did a scan I had 9 brain tumors. So you can understand why Im going to be cautious and hold my breath for the next 3 months. Oh yeah, I get scans again in 3 months to check progress.

Thank you all for your daily prayers. If I could just ask for you to remember me and my family in your prayers, we would appreciate it. While we had good news today, the fight still continues. We have won this round. Now to stay healthy and prepare in case of round 2.

Scan Results!

IM IN REMISSION!!!!!! No cancer found. Brain is all clear!

A day spent cold, hungry, and radioactive

Today was scan day. The 1 day every 3 months that I plan my outfit around no metal in my clothing. (Otherwise I have to take it off, and thats annoying) so I go prepared. My outfit of choice? Athletic gear ex. Running shorts or yoga pants, sports bra, and a jacket. All because its cold in the mri/ct/pet scan rooms.

Scan day makes for a long day. I have to go in hungry, no food after a set time. Then depending on my schedule, I'm not able to eat for 6-8 hrs. Easy right? Not when I hadnt eaten since the night before. By then end of scans I was running (almost literally) to lunch. I hate being hungry.

So yeah, add in blood work, having to drink barium, laying in a tube forever, and we have a party. At least I enjoy talking with the staff. Im blessed that they are a good grouo, otherwise they could make the experience pretty grim.

After the scans we took little man to the pool. Hes finally getting brave and doing better in the water. Its fun to watch. I of course was side lined due to my radioavtive status. Talk about a hear broken little boy. This afternoon he clung to my leg saying "up!". Its hard to say no, but I had to have his dad take him away. 24 hrs without baby, but we manage.

Theres my day. Now we wait. Wednesday we find out my results. Fingers crossed its a good result. Now to keep busy.

The scoop on my hair

I know people are naturally curious on hair issues of cancer patients. The whole brain radiation caused all my hair to fall out. (Eyebrows too) it all started growing back, but with a twist. It came back unruly, curly, and very patchy. I joked that I had the 'family' hair cut. To explain...bald on top, and hair on the sides. I let it go, assuming it would catch up and grow to look norml.

Fast forward, and I had had enough! I grabbed the clippers and buzzed my hair.  GI Jane style. (ok its a bit longer but you get the gist). Shockingly, it looks better. You can see thr bald spots growing in. (finally!) Im not sure how many women would do what I did. I dont care. So it means a longer time with hats, scarves,  and wigs. I think its what I nedded. Now it can all grow at one slow rate. :) plus I can go from blonde, to brown, to red. All based on how I feel. Non comittal hair color!

Doctors and ranting

Yesterday was my doctor check up day. They said all my blood work looks great. They even went so far as saying "on paper youre healthy-blood wise". Other stuffwe discussed was my stomach issues. We are still trying to get me to a normal type of living on these drugs. So we are back to trying new meds so I can get this under control.

We scheduled scans for next week! Finally, we will get an updated look at how the cancer is doing vs my meds. If its stable or better I stay on the meds. If its worse I get off the meds. There is no point in taking them if they dont work. That and they are pricey. I cannot imagine what peopke without insurance would do. My insurance pays 18,000 a month just for those pills. (Insane) I really do think we need a national helthcare option.

So I have a new rant this week. Ellen D. Announced on her show "the coolest sunburn contest". What the heck people!? We are back to promoting not using sunblock and even prompting tanning bed useage!  Meanwhile melanoma patients are dying daily. They might as well throw a contest about looking cool smoking. I swear people dont think. Im determined to write and call ellens 'people' and share my displeasure. We shouldnt make light of this. The harm of 1 burn can ruin your life. Doesnt take much.

So to sum up everything....I fight daily to keep food in me. Otherwise Im doimg pretty good for a cancer patient. :)

Catching up

Ive had a busy week so far. Running here and there. Getting out is nice, but battling the heat isnt. Im very delicate temp wise. (Thank you chemo) so I can get very sick very quick. Keeping that in mind I've been out and about. Carrying cold water, an umbrella, cool clothing, and knowing when to get my butt inside. I love summer, but cant take the heat this year.

I managed to suck it up and get some shopping done. After loosing 40+ lbs, I was forced to get some new clothes. Ilitterally had my pants fall off the other day. So glad it didnt happen in public. Thought I could make em work but nope! Haha. I guess my problems could always be worse.

So, how do I feel daily? I take it hourly. Mornings arnt great and neither is dinner. Both are when I take chemo. Basically lunch is the only good meal for me. If I get too hot I puke. Overall the key is to take it slow.

Thank you for all your prayers. My family is eternally greatful.

Happy birthday to me.....

So yeah, its officially my birthday. 29 years old. Officially closer to 30 than 20. Its honestly hard to wrap my head around. Not the age, as much as what it means. I was originally put on hospice, and told I would be lucky to see christmas. The likely good of seeing my birthday was just not gonna happen, but here I am. Wrapping my head around it is hard.

Today I spent with my little family. We went on a walk, went to the pool, and then took a long nap. For me thats all I could ask for. (Well that and a vanilla dr pepper). I was supposed to go to dinner, but over did myself this morning.  Heck I rarely do dinner. Chemo doesnt agree with food. So we cancelled childcare and reservations to hang at home with my hubby and a movie. We will reschedule another time.

At the end of the day I'm perfectly happy. Yeah, I will likely puke before my night is over, but it doesnt matter. Im here and I wasnt projected to be. So I am happy with my quiet night at home with my boys.

Doc update

I've had a pretty good week so far. My stomach has behaved, and energy level has been pretty good. I get tired easily, and don't tolerate heat well. If I get too hot I puke. (it's a lovely response).

I had a doc check up today. My blood levels look good. I'm tolerating the chemo well. I was approved to continue the chemo with another check up in 2 weeks. At the 2 week app we will schedule new scans. We need to see if it's working. The scans will tell all.

So now we wait and try to rest.

Family (warning…may be sappy)

I don't know what its like to not have an extended family. Aunt so and so, cousin whomever… I am blessed to have a huge support network of family. Today we got together for a long overdue family reunion. I believe we counted a total of 45 people. Seems like it was just yesterday that we were either having christmas or easter meals at the church. Here we all were probably almost 20 years later with a bunch of new members. All the kids had little new families of their own. Me included.

I am  blessed to have such a family network. As I watched the kids play, I realized that this is likely the last time we are all together. We are all getting older, our lives more expanded. Calling everyone home for a meal/ get together is more and more challenging. I try to think of what if we wait another 20 years? I guess my point is, I need to remember what I have now. Spend more time with the people I do have in my life. In another 20 years some of us won't be here. We need to celebrate the family (whomever we call family) while we have these precious years.

The #1 question asked of me is "do you have family close by?" Im proud to say "yes, yes I do."

Bikes, Friends, Family, and a Cause

What a weekend! This weekend was "Summer fun Run!"

The turn out was great! Had the weather not been questionable I bet more people would have attended. That said, a couple of riders from the 'Faith Riders' group took a fall. 2 Motorcycles went down. Luckily, no one was injured.

I unfortunately didn't get to attend the event. Friday we (hubby, me and little man) loaded up and drove to Joses. I made it to the parking lot before I got sick. We had to turn around and go back home. :( It was the end of my first week back on full chemo. Ive had issues all week. I had really hoped to be able to see everyone at the event, but no such luck.

Thank you to all that came out and showed support. We cannot express how much your support is appreciated. Here is the "Riders of Cassie". Thank you all for braving the weather.

Doctor/ Test results.

So Friday I had my endoscopy. The good news is they got me on a new medicine that has helped resolve all my tummy issues!! YAY! The bad news? They found a dime sized tumor in my stomach lining. They are 99.9% sure its melanoma. They biopsied the tumor to make 100% sure. But lets face it. Its Melanoma. They've described my melanoma tumors in the past as a very bright purple. Might as well be a flashing neon sign screaming 'MELANOMA HERE! YEP MELANOMA'! Ha.

A new drug helped me feel normal all weekend! Im so happy that finally I had a good weekend. Come to find out when they take out portions of your colon it causes "short gut syndrome". What does that boil down to? Same amount of digestive juices (bile etc) and not the same amount of intestine and colon to absorb it all. They gave me a prescription and BAM. I was fine the next day. All issues solved. Im so glad.

On another note, I started back on my chemo drugs. Im feeling pretty good right now. I started with a half dose, and go to a full dose tomorrow. One part sucks….I think my hair is falling out again. YAY me. To be fair I look like a middle aged balding guy now. It never quite filled in after radiation. I have bald spots. I usually wear a wig, but Im seriously thinking about shaving it. Hey, might as well start over. I thought it would fill in, and its not. Now its getting worse. May as well embrace the fake hair and have fun with it!!! Maybe a pink or purple wig is in my future. :)

So now what? Well we meet with a nurse in 2 weeks to check my blood. This has to be done when you're taking toxic meds daily. In 4 weeks I meet again with the doctor. At that time we will schedule a new round of testing to see whats growing or not growing. So there you have it. Everything I know about what is going on. :)

What a Week.

Sorry for my lack of posts. Ive been out of town trying to get well before my next chemo. That said we celebrated my sons 2nd birthday this weekend! Boy how time flies. Seems like it was only yesterday that he was an infant. He got a new truck for his birthday. Its like a cozy coupe car, but a truck. He can peddle it with his feet. (think flinstone car) He wakes up now so happy yelling "Truck!!" Its really sweet to see. That boy loves trucks.

So as for me…. Im still having tummy issues. They put me on antibiotics to see if I had an infection in my tummy. It seems to have helped. Friday I go in for an endoscopy (where they stick a camera down my throat to see my tummy) they want to make sure its not an ulcer or something else in my stomach causing issues. I just hope we figure it out. Its really difficult to do anything with the random vomiting and diarrhea. Im just ready to get it resolved. Meanwhile I start back chemo at half dose.

Its crazy how expensive everything is. This month alone my family will have spent over $800 in medicine/prescriptions alone. I don't know how some afford it. Once you add the insurance and doctors bills to it, its almost a full time job just paying these people. I swear it would be nice for universal healthcare about now. Seriously. Yes, I know its a giant political debate. However, at this point I think we need it. If England can do it in the aftermath of WW2 why can't we? Some days I just wanna move to Canada….

News

Sorry for the delay! Been on a mimi- vacay at our creek property. I let all my electronics batteries die, so no blog posts.

I saw the doctor today. To recap: Ive been off my chemo drugs for 2 weeks now. We were trying to get my stomach healed before round 2 of chemo. You may ask "whats wrong!?" Well Ill be blunt…. vomiting and diharreah. It is a nightmare. The meds they gave me to heal my stomach lining made me even more sick. We got off those and have tried many different things. Nothing is helping. Ive changed my diet, and tried yogurt and coconut milk. All in the name of stopping the madness. The doc today is waiting on some test results to rule out certain infections. He surprised me when he said he's going to order and look at my tummy. (I can't remember the word) They want to get in there this week and see if maybe I have an infection or ulcer causing my issues.

What now? Well now Im waiting on a call for my scope appointment, and my test results. I start taking my chemo asap. (not sure if I mentioned I take chemo by pill at home daily) We had to order new meds that will be overnighted here before I can start up again. I will admit, Im not looking forward to starting back. So now we wait again…..hopefully we get this figured out.

One thing after another,

The past few days have been rough. Ive been sick in bed all but for one day. Seems like Ill have 1 good day then a bunch of bad ones. At this time I stopped the chemo. I have to give my body time to heal. My tummy sees even water as a threat these days. So for my health and healing we are taking a break. So far? Break hasn't gone as expected. Still having all the tummy issues. Then I discovered the new meds they gave rant working for me. As in I throw them up immediately after taking them!

That said we are going back to  very simple but healthy diet. (and its the only things I can seem to keep down) The BRAT diet. Banana, Rice, Apple sauce, Toast. My doctor is the one who suggested it. Try to help my tummy heal, then add things back in. Once healed more then we can talk about more chemo.

The only new new thing is that my headaches are coming back. Ive had one for almost 2 days now. We are treating them best we can. (funny that the best help is a good ole ice pack).

Other than all the crummy medical stuff we are doing good! Planning Elliots 2nd birthday party! And had a great mothers day. I hope everyone else had a good mothers day as well.

Good Scan Results!

So we got our scan results yesterday. My body is clear. I originally had a spot on my spine and some lymph nodes we were watching, but they are now gone. The spot on my spine was attributed to my leg issues and why I could not walk a few weeks ago. That, like I said, is completely gone. The only things remaining are the tumors in my brain. The good news is they shrank greatly!!!!! One tumor went from 5.5 to 3.5 centimeters. Thats crazy. Which also means the chemo is working.

So the good news is its working. The bad news is Im still having issues tolerating the treatment. They discovered that my stomach lining is a disaster (hence the puking). We added a new medicine that is supposed to heal my stomach lining. Once healed I shouldn't be nauseous anymore. The meds they gave me have started working on the diarrhea as well. These things have to be under control for me to continue taking these drugs. I simply can't stay chained to a toilet the rest of my life. You may ask "well how long can you expect to stay on this chemo?" My answer? The rest of my life….. So our goal is to get me able to tolerate it, and be able to leave the house. :)

Overall good news. We are still working the kinks out, but I have a bunch of people cheering me on. There may be a light at the end of this long tunnel yet.

Week of the Doctor

So for the week I get to have iv fluids daily. Since I haven't been able to keep food down they want to make sure I don't get dehydrated. My scan was only of my lower back. Good news is the tumor on my back that was likely causing my leg weakness is gone! Ive been getting stronger daily.

They scheduled a whole new set of scans for monday, results tuesday. I will update everyone sometime tuesday. I have honestly been feeling miserable. Hence the lack of posts. Ive been in bed exhausted for the past few weeks. Add that to all the tummy issues and I haven't been very social.

All that said, Im going back to bed. Ill update when I can.

Its friday!

So Ill admit I was a bad today.  Since I was so worried about getting sick on the way to the docs office I just didn't take my meds. (bad I know) Sadly, I feel great. No puking, no other tummy issues. I feel so much better. Granted chemo isn't known to be all sunshine and rainbows. Just these past few hours have been great not feeling sick. I go back to my normal regimen soon. They did give me some new meds to combat the side effects. Hopefully they work. I honestly can't live with the running to the bathroom every 1-2 hours. (its like clockwork.) We have to find a way to make this work.

That said, the good news is my headaches have gone down entirely. In fact I haven't been on any pain meds at all for the past 2 weeks!! So something is working in there. Its likely the chemo, but we don't know for sure.

I did have a scan today, although it wasn't the one we thought. It was a MRI of my lower spine. None on my head like normal. I guess they wanted to check my back for more tumors since Ive had trouble walking. Im hoping at least it will show the one on my tibia has gone down or disappeared entirely. :) *cross your fingers and pray!* Im supposed to hear from the doc sometime tonight with the results of the scan. I also was on the border of dehydration so today they gave me fluids etc. My blood work looks pretty much perfect other than that. Except there is one tiny issue…….within the past week and a half Ive lost 15 lbs. Now Im all of 5'3'' so small, 15lbs is a lot on top of what I had already lost. Im officially downy to the weight I was in High School!!! (every girls dream right?) Problem is nothing fits, and with all the puking I haven't had time to go shopping. My pants literally fall off my hips.

This weekend no big plans for my group. We plan on trying to get me to be able to tolerate my medications better, and rest loads and loads of rest. Thats all I have for now. Good night! - Cassandra

Blah

I've been sick the past few days. I can't keep any nourishment down. We got high calorie shakes and I couldn't even keep that down. I've lost 5 lbs or so and sorta starting to look like a cancer patient.

Today we started a notebook on when I take meds, and when I get sick etc. I think I can sorta for a pattern. If so I'll know when to take them.  They have a specific schedule. Either one hour before food or 2 hour after. I think I'm noticing that if I do the meds 1 hour before I eat I don't get sick. This is just a theory.....not enough evidence to proceed.

I didn't sleep at all last night.  It was like having ants crawling all over my skin. So I couldn't get comfy. Add that to me always being cold lately, and it was a long night.

Today I'm taking it easy trying to rest for tomorrow.  It's scan day!! We get to see if this awful chemo is even working. Yay!

Chemo sucks.

Sorry haven't posted in a while.  Been dealing with chemo side effects.  Seems like I've had every tummy reaction possible. (To put it nicely) trying to stay hydrated and get some relief.

We had a great easter. Luckily my chemo chose to be calm for the day.  Elliot had a blast with running around getting eggs. Although he prefers a truck bed to a basket. He threw the basket and opted for a toy dump truck instead...what a kid.

Sorry it took so long to up date - cassandrs

Its Friday!

I mentioned that I visited the doctor yesterday. What I forgot to talk about is some happy news. If I do well on this chemo it opens doors. We  were speechless when he set up appointments with us for in June!! Its hard to believe that just 2 months ago I was on hospice care, and told I had weeks/a couple months to live.

The chemo is doing well. No real side effects(which is good). I will stay on this drug combo for as long as possible. If bad effects start happening then we stop. These drugs have been shown to shrink tumors in brain completely in one patient. Eric and I have read review after review that has good news. This is amazing. It passed just in time. When we say its "new" we mean literally just approved.

I seem to be getting stronger on my feet as each day passes. I had my last radiation today. No side effects! woohoooo! So now we wait. I have scans on the 25th. Until then I nap, and spend time with family. If the weather is nice maybe a zoo visit. :)

Not just any thursday!

Today was my next to last day of radiation!!! Tomorrow is my last day. This round I felt no side effects. Thank the Lord for that. No more radiation is planned as of right now.

My chemo is going well. Im on 2 different types of chemo. By themselves they have horrible side effects, together they cancel each other out, so very little side effects. The doctor already thinks its working too!! My legs are getting stronger (Ive been in a wheel chair lately). My head hasn't hurt as much etc. They think these meds are really helping. We won't know specifics until my scans later this month. So yay!!!

Im doing pretty good overall. Other than being tired, and not able to walk long distances Im good. I sleep a lot. I don't know what I would do without all the help we get. From babysitting, to food. Every bit we appreciate. I helps make things easier. Right now Ive been using my Aunts cane. Its purple and awesome. Makes having to walk with a cane fashionable! I just want to make sure I say thank you.

Chemo Day 3.

My chemo is 5 pills I take at home spread throughout the day. So far I don't have any side effects. My tummy feels a bit weird but since Im healing from that surgery, I attribute that to the surgery. Im also have very very very dry skin. This is totally uncommon for me. Ive been slathering on lotion like its going out of style to no avail. Im still loosing weight, which is a problem. I haven't weighed this weight for a very long time.

The biggest issue right now is Im very weak. My legs refuse to hold me up walking very long. Its almost as if  my feet are not listening to my brain. My ankles roll, and my toes feel numb. Originally I was walking with my cane just fine, but I keep getting weaker. We had to pull out my wheelchair this week. Its so much easier in the chair. I aways push it a bit with walking, just even from my bedroom to the living room I almost fell 2x. thats how bad it is. Im hoping that we get a reason why soon. I have scans for my spine scheduled for the end of the month.

I wish I could get out and play in this beautiful weather. We took Elliot to the park yesterday. They parked me, and I watched him climb, and slide, and have a blast. All we had done was my radiation therapy, the playground, and I was done. I pretty well went home and slept the rest of the day.

Now at noon, Im in bed for my daily nap. At the same time we are waiting on Lowes to deliver a new washer. Ours decided to break last week. Boy do I have laundry piled up. We were blessed with many people offering up theirs to borrow just to get a load done. (and we did get 2 laundry loads done at my sister in laws. Its just going to be nice to be able to do our own laundry.

So that is where we are right now. Just a lot of watching me carefully for side effects.

5 down 10 to go

5 days of radiation done! Now for my weekend break. So far no side effects of treatment. As I know from prior radiation experience side effects start late and last long after radiation treatment. So we are good on that front.

I am still having problems with my legs. We had a emergency CT scan yesterday to see if there was something pushing on my nerves, but nothing was found. I think next time they will do it with contrast to help see. I can't walk well at all. Ive been so close to falling multiple times, but manage to catch myself. (or eric catches me) They gave me meds for the weekend to help with pain and will see me monday. Crazy.

On a lighter note, my surgeon said Im healing very well! So Im cleared to start trying to hold the baby again .And more active, all of which I find funny since my legs aren't working properly. I swear if its not one thing its another.

Day #1 Radiation Done!

First day of radiation is done. Only 14 more treatments to go. Thank goodness that radiation treatments don't hurt. Its just a quick in and out procedure. Im also blessed with good therapists. They are fun to see daily. That I think is an important quality. They have the best bedside manner.

Im still healing from surgery but overall doing pretty good. My scars are healing nicely, and each day its less tender. The only side effect I have right now is that my legs are very weak. I had to bring out the cane to walk with. If I were to walk any distance Id have to get my wheelchair out. Its crazy on how just a couple of weeks in bed has put me back to where I was needing assistance. The best way to describe it is that my knees just give way. I haven't fallen as I make sure to have Eric help me, and not push too far. I hate having to constantly go back and forth between sick/weak and strong/semi healthy.

So as for the rest of the week: I see the radiation doc wednesday. I see my tummy surgeon thursday, and if cleared start chemo friday. Woo hoo. How fun!

Say what!?

I wasn't expecting the new meds until next week. They arrived today. Im not to start them until I get the all clear from my surgeon next week, but they are here. I finally got to read all gritty side effects. A person never reads those thinking they will actually get one or all side effects. Too bad I know different. The last therapy they had me on I had every single one of the possible side effect. 

As I read the possible effects the more worried and scared I get. The likelihood of the side effects are low, according to the doc. These are some serious effects. Back to ulcures, eyesight loss, weakness and more. The meds are covered in yellow with CHEMO DRUG written all over them and the packaging. Its going to be very hard for me to start this med. The only reason Im trying it is because I promised. I promised my family and myself I wouldn't give up. If there is an option I would try it. Ive just been they so much pain lately jumping back in is scary. More pain is scary. 

So far I expect the doc to clear me. Im off the extra pain meds and feeling pretty good. I still have a little pain at my incision sites. Im also able to sleep laying flat now. Bending over still is a bit of a stretch, and I can't lift anything heavy. Overall I have healed quite well so far. Next week is wham all the new stuff starts. Radiation, Chemo etc. 

I have no plans except to rest up and work on healing. Eating better has always been a priority in my house. We are keeping that up by going more natural diet. Since I can't eat much in one sitting its lots of little meals a day. Fruit, veggies etc.  Feeling good on the inside helps me feel good all over. 

The new plan

Another day another challenge. We saw the oncologist yesterday. Right now our plans are to talk to my Radiation oncologist and start radiation on my left tibia the first week of April. We then have a follow up appointment with my tummy doc to get the all healed all clear. If we get the all clear we are going to start a new new new drug just approved that is supposed to help knock out blood supply to cancer cells.

This come in pill form so I would have the therapy at home. Unlike chemo. If you remember the last pill therapy up me thru hell. Yes, I said HELL. Read back.. I had every side effect. I refuse to go through that again. This time we stop immediately if it starts to get really bad. This new drug can't make the cancer worse, it can only either do nothing, or cause it to get better. We agreed to try it because we have no other options other than not try. Like Ive said many times before, Im not quitting. We are in it for the long game. Terminal or no….This is not taking me easy. Im taking it with me. (as if in battle).

I will admit Im scared. Im scared of more pain. Im recovering from surgery in pain, unable to hold my son for the next few weeks, and this is the time Im relying on the strength of others. My family and friends. The idea of more pain up the road is very hard for me to be excited about. Then there is my family. Right there with me. Every step of the way.They are the only reason I can stay sane and focused these days.

My aunt stepped in yesterday to help watch little one. He is quite the little boy. Run run run. In those few hours I think he wore her out. I know he runs us ragged, someone he doesn't see daily?? yeah buddy, he's ready to play. I love that I have the family local that we can use in times off need. Thank you Aunt D! for watching Elliot again! He was soooo tired he even slept in.

Ill update you all again soon. As of now Im healing more and more daily. Its just a matter of eating more right now. I still just don't have the appetite I need.

Day at a time

Well today its easier to get in and out of bed. Ive been walking the house too. I even managed to do half a load of laundry. The bending over is what kills me. Ouch! They had told me to either remove the bandages or let them just come off. Whatever I wanted. Well, I removed them. I discovered once again, Im allergic to the adhesive on band aids. Add blisters to my wounds. I have 7 incisions the doctor did, and now multiple blisters where the bandages were. Go me.

My appetite still isn't back. Im eating like a bird. Which is the diet my doc has me on. To be fair I don't feel like eating much other than his diet. I see food and it just reminds me of all the holes in my stomach and kinda wince.

I have an appointment with my oncologist tomorrow. Im sure they will want to start radiation on  my leg asap, or something similar. I wanted to wait a bit to heal before messing with daily visits to radiation. I know it seems others have the theory that I need to start therapy asap. I just am worn out. Im not even 1 week  out from surgery, can't sleep laying down, and can hardly walk. But they want to start treatment. I just feel like I need a week or two of healing before we start damaging another part of my body. The side effects aren't bad for just the leg, but still. I feel like my body would heal better if I give it a few days in between.

Either way Ill see what the doc has to say tomorrow and let y'all know what I come up with. Well what WE come up with.. Ill let everyone know.

Another surgery experience down

Here we are not 24 hrs from surgery. I'm admittedly cranky due to not enough pain meds. Eric and I started adding up dosage and I take more pain killers daily than they are giving me here. No wonder I hurt!

The surgery went well. They said the tumor was a monster. It had even grown since monday! Doc said we would've has a huge issue if we had waited or not sought treatment. I'm glad we made the correct choice.

They did the surgery laproscopic.  So I have 7 holes in my tummy.  I tole Eric "well I'm not wearing a bikini this year! Oh well. It could have been worse. Much much worse.

I've actually managed to get up 3x and walk a bit today. (With help) and they are letting me eat real foos. They expect to send me home tomorrow. I'll post more then. Love you guys.

Roller Coaster Ride.

Went in yesterday for my final mapping for radiation. They got me all marked up and prepped for my first treatment. (which we had to schedule for a few days out). I then get a phone call a few hours later that my radiation has been cancelled, and they are getting me into a surgeons office asap.

The surgeons office calls almost immediately after we hang up with the doctor, and they want to see us once again ASAP. So off we go…

We find out that in just the 1 week from my first scan to the scan that morning the tumor has grown quite a bit. It is at risk of causing an obstruction in my bowel. So they set up surgery for friday morning. Meanwhile like clockwork I can't keep any food down. They had me an appointment at the hospital for pre-op today that we rescheduled due to me not being able to leave the floor of the bathroom. If it gets any worse we were told  to call the doc and he would move up surgery. (for fear of a blockage that could happen anytime)

So that tummy ache Ive had for the past few weeks? tumor! While I loved the hospice nurse, I wish we would have found out sooner. Granted, had hospice not told us to go get a scan we wouldn't have figured this out until I got very very ill. Just amazes me how aggressive this cancer is, and how widespread. Leg, tummy, head…. Crazy.

My surgery is on friday with a 2-3 day hospital stay. Maybe longer depending on how I do they are going to try to do it with a robot so minimal incisions. Lets hope they will be able to do it that way.

Until then Im in bed, staying close to the bathroom. And sleeping a lot. Seems like I will be on a liquid diet for the rest of the week. Talk about a crummy weight loss plan.

Radiation Prep-Day

Today was my radiation prep appointment. They had me drink 2 bottles of barium (normally I only have  to drink 1) for a very in depth CT scan of my new tumors. The barium has never made me ill before, but today is another story. I was hardly able to keep it down, now that the scans are over I still feel like my tummy wants to rebel. ICK.

So for my head I showed you the mask they made me ware during radiation. It allowed for no movement so that the lasers hit the same place every time. So for my tummy and leg they also had me on a body mold. It keeps everything in the same spot everyday. Every scan will be the same. They also draw red marks on me and the mold to show when the lasers line up. Its really pretty neat. As always I love the people there. Its nice to be able to joke in an awkward situation. Like how they draw the radiation lines on my skin. You wouldn't expect that on a normal day. :) Things get a bit personal.

Now that we finished today successfully, we are waiting on a phone call that says when we start my daily radiation. We may know today or next week. As always hurry up and wait.

As for me, if I get to feeling better we are going to go to the park. Its supposed to be 70 today, an its perfect weather to let little man run.

"The Plan" (well what we know right now)

Ok its been a busy few days. To recap everything ….
1. The tumors in  my brain, in my fluid around my brain all shrank or stayed stable.  With the original count of 9+ tumors that is a HUGE deal!!! Woo hoo!!!

2. Found a new tumor on my left tibia. (right under by knee) This was a shock because I have no pain from it.

3. Found a new tumor in my small intestine. Rather large and possibly already growing into a cluster of bowels. (glamorous sounding right)? This one I expected. This was why hospice wanted scans done. Ive been having tummy pain for weeks now.

4. Due to good brain scan, and new findings Im off hospice and back into the care of my oncologist. (Hospice only takes/keeps patients if there is no further treatment that can be done. OR if a patient refuses treatment and is not seeking a cure) Well we have treatment options for my tummy and leg. So we are TAKING IT! So far there isn't anything we can do for my brain, but it seems to be fighting on its own. So we broke up with hospice so to speak! This is a great thing. The fight continues!

Whats our next step? We met with my Radiologist Oncologist friday. We are in for 15 rounds of radiation to my tummy, and 20 rounds to my leg. I go in Monday to have my CT scan done with the lasers. (what I call them) and get me all lined up on the table. (if you've read earlier posts I put a pic of my 'mask' for radiation they will do the similar just lower) The doctor said he will for sure be able to get most of it, but he cannot guarantee all. Remember Im just buying as much time as I can. My brain, brain fluid, spinal fluid are all heavily involved with cancer.

To sum it up we are doing good. We have a new plan. Heck, just a few months ago I was told I wouldn't see christmas. Now Im back to looking at treatment plans. We get to reevaluate everything. My Docs are also looking at chemo or other similar options for after radiation. Now that Ive shown improvement in the brain I may qualify for a study or trial. We won't know for a while.

I have many side effects but overall we are doing good. This is wonderful news.

We're Fighting Back!

I got my test/scan results today. Bad news? I have 2 new tumors. One in my small bowel, and another in my tibia. The good news? Everything in my brain shrunk! I mean everything! This is the best news we could have gotten. Good enough that we are about to notify Hospice that we are getting off their care. (I have to get off hospice care to be taken back to active treatment by my oncologist).

So my new treatment plan is this (as of right now) they are planning on radiation for my tummy and my left leg. After that I have no idea. I don't meet with my doctor until the 19th, lucky duck is on vacation. We are likely to hear from radiation soon and get a treatment plan set up for them.

Im excited at the good news. It means Im back to not having to count days/weeks to live. It gives me even more time. I explain it to myself as 'a few steps forward, and a couple steps back'. It stinks. Being told you're dying to have them turn around in 3 months and tell you that your body is healing, and we now have more options is hard to process for me.

Im having a hard time wrapping my head around this good news. Ive been spending a long time becoming at peace with everything going on. Im now having a hard time believing it, and getting excited.  Ill get there. It will just take me some time, and when I hear what the doctor says will help too. No matter what happens, we always said we are Fighting to the end.

Snow day!

So since the ice/snow/sleet/hair/rain the medical office was closed. Lets be honest, all of NWA was shut down. Due to this I didn't get my test results today. As of right now schools are closed tomorrow, but it doesn't say my oncologist is closed. Im crossing my fingers that they are up and running. I know Im wishing that for my own selfish reasons. I hope the roads are clear enough people can safely get to work.

Today we kept our minds off the impending news. We got out slowly and brought my mom lunch. Today is her birthday and she lucked out with a snow day! She gets another tomorrow as they have already closed school (again). I swear these kids are going to be going to school all summer.

So another day of waiting. I see my nurse tomorrow as well. Ill tell everyone what I find out, once I find out.

Well thats fun...

I had my scans done yesterday. I have a love/hate relationship with scan day. I love the idea of getting info on whats going on inside my body, but I hate fasting and getting poked all day. During my CT scan a plastic part of my iv broke and sprayed contrast fluid all over me and the machine. (lovely) They weren't sure how much contrast actually went in before breaking so I wasn't allowed another dose. The other part is for 25-48 hours I become radioactive. Its bad enough the nurse can't even stay in the room for the first 45 minutes after being injected. So that means once home, loads of water and no being near baby for 24 hours or more.

So we should find out monday what the results are. Until then we are trying to keep our minds off of it. Luckily its easy to do. My husband woke up sick, Ive got the sniffles, so we are trying to let him rest. All the while I watch the baby. Luckily Elliot doesn't want to cuddle, but prefers to play by himself today. (I lucked out) Thats it for now, Im going to go crazy disinfecting my house. Lysol here I come! (Elliot just went down for his morning nap…Eric can nap, I can clean! )

Whats up?

Yesterday we went and visited my oncologist. My Hospice doctor/nurse team decided due to new symptoms it would be nice to get some new scans to see whats going on. Luckily my oncologist agreed and we now have scans set for friday!!! Finally a peek into whats going on. More tumors? Less? or are we stable?? Im happy to be able to get a glimpse. Granted now Im antsy to get this over with.

Today Ive spent most of the day in bed. My joints are stiff which causes it hard to walk. I also have a headache thats just been nagging at me all day. (yes Ive taken meds). So in bed I lay. Only thing that helps is sleep. My eyes are blurry, so its harder and harder to read. Words just seem to slide together into a long black line. Sometimes they even wiggle! Gotta love what a brain can do.

I did manage to get some housework done yesterday. (I actually enjoy housework) I went to grab a shirt…and promptly realized my new banana republic shirt had shrunk. Round of applause……I had a dry clean only shirt that I didn't know about. That lovely shirt (worn once) now can fit an oddly shaped 7 yr old. On a brighter note I finally found some sunscreen that doesn't smell like sunscreen! its from Targets in house brand "up&up" and its just a little bottle labeled moisturizing cream with spf. I was/am highly impressed.

We won't know the results of my scans until next week. As soon as I get any info I will let everyone know.

Been a while….

I didn't realize that I've neglected my blogging duties. Ive still been not feeling great and mainly staying in bed. I haven't even been doing as much housework as I normally so. Ill admit Im pretty anal about how I keep my house. Lately Ive just loosened the reigns and just let it go. That said, I did have a good weekend.

Saturday morning we had a 'Mad Housewives Tea' 9 of my friends and family (women only) got together and had tea. It was on my wish list to have a fun frilly tea party. We had tea sandwiches, pretty teat pots, and tea cult, and even social tea. Its safe to say we all had a blast. We all love the men in our lives but this was a chance for us to have a couple hours to ourselves and be kid free for a bit. I wish I had taken a picture of the table, but here was the menu

Blueberry scones
vanilla scones
fruit skewers
cucumber sandwich
chicken salad sandwich
turkey and cheese sandwich
and then an assortment of deserts.

For teas we had a huge selection as well. My new favorite is "chocolate scone". It is as rich as a mocha, with none of the milk, sugar, or calories.

The tea party wiped me out. I got home around 2, and was woken up at 8. My husband said he thought I needed to sleep so just let me sleep. Thats how it is these days. After either an outing or event I go home and crash. So while its good when I get get out, the results are me sleeping for a looong time. Sometimes I feel like sleeping beauty. I feel like Im starting to sleep more than stay awake.

My eyes have gotten worse. I really struggle to see. Everything is blurry, and I frequently loose sight entirely out of my right eye. It makes it hard to blog or write. Ive also started been unsteady on my feet. My legs are getting weaker again. We just weaned off the steroids so my strength should go back up.

Ive been dealing with more and more splitting headaches latterly. All I do is put my cool mask on, and lay down with my eyes closed. Its the only way to make the pain go away. Food is back to being just ehh. Im rarely hungry anymore. So all that steroid weight is coming back off. Ill admit I gained 20lbs when they added the steroids. Im down a bit but working on dropping more.

So the good news is we got approval to get full body scans done!!!! They normally don't do this when a patient is on hospice. So Im special. We have some new symptoms that don't exactly mix. They want to find out whats going on in my tummy. They think it may be a tumor, I had one in my tummy before but the yervoy made it disappear. They are afraid that has come back, All I want to know is whats going on in three!!!! has my brain gotten better'? worse? whats the timeline look now??? So thats whats going on with me. I see the doctor and nurse tomorrow. We are going to set up scan dates and times at that time. They also want to run another urine test. To double check the last one?? I dont know… So until tomorrow…

Im gonna take another nap.