Saturday, February 28, 2015

Florida & Treatment 11








We had a nice road trip to Florida last week. Mike did very well on the trip. It made me happy to see him feeling well and getting a break from treatment. Our road trip home was a bit of a nightmare. We hit a snow storm in Maryland that slowed us down and forced us to stop at a hotel for the second night on our way home. In all we were happy we got to spend some quality time with our family and we got some time away from reality.


Ava & I at Animal Kingdom

Breakfast with Mickey

Mike & I in Epcot

Mike & his Family

My Family in Magic Kingdom

Monday morning it was back to reality. We were back at Dana Farber for Mike's 11th treatment. Mike woke up not feeling well. After having a month break from treatment he had a lot of anticipatory anxiety. He was very nauseous and had a migraine. His body was still exhausted from the trip. We did a ton of walking and his legs and back were paying for it. He also didn't sleep well in the hotels.



Sad that were back at Dana Farber

Once we arrived at DF Mike went to wait in line to check in while I waited in line to pick up his prescriptions. Next it was on to the waiting room for him to get his labs drawn. We waited for quite some time. They usually are running behind but that day it seemed to take longer than usual. Next we went up to the 7th floor to get him checked in to get his vitals and then to see his doctor. His doctor examined him and gave him the okay to get treatment. Mike wasn't feeling well while the doctor was with us. He had to lay down and he was covered in sweat. His doctor also thought his anxiety was getting the best of him. He ordered for him to get fluids during his chemo which defiantly helped him. His oncologist told us that when he first started treatment back in September his tumor in his pancreas was measured at 2.9cm. After his first 4 rounds of chemo his scan measured at 2.7cm and his latest scan measured at 2.0cm. He no longer has fluid in his belly and the lesions in his stomach look better as well. He thinks his treatment is going well and has hope that it will continue to help his quality of life. After that appointment we checked in across the hall for him to start his infusions. Our favorite nurse was there which is always a plus. When Mike got to his room there was a sticky note on his room door that read "This room is reserved for Mr. Howell". She is so good to us. There are only about 4-6 beds on the floor the rest of the rooms are chemo chairs. Some of them only have a hanging curtain separating them from he next room (we hate those rooms). We are very lucky when he gets a bed and private room. Mike does not handle treatment well and often tries to sleep in bed during his treatments. Thank god for his nurse!

Kisses for Mike During Treatment
We tell her every time we see her. She is an angel! After Mike was set up and on his way the social worker came in to check in with us. She checks with us every time we are there. After that I took care of a few things like the free parking pass, got another prescription and got us food. I was exhausted during his treatment. My throat was hurting and I was starting to feel sick. The trip had caught up with me too. I ended up with a cold and did everything I could to keep it from spreading to Mike. One of my biggest fears is him getting sick. His immune system is compromised from treatment and harder for him to fight off germs. I still am not feeling great today. Mike has a sore throat too and I hope it doesn't get any worse. Today is Mike's 5th day after treatment and he still is extremely fatigued. He has spent most of his time on the couch or in bed. I did surprised him with quick trip to the beach, arcade, and beach pizza today. On the way home he agreed it was nice to get out of the house for a while. When we got home it was back to our usual spots on the couch. He has been hard on himself this treatment. I keep reminding him that we had a very busy week right up till the day before treatment. His body was still recovering from the trip. Going into treatment he was already struggling. The doctor said in the beginning every treatment will hit you different. It all depends on the week before and how rested you were. He has also been having more stomach pain lately and not eating as much. I worry about his weight. He has continued to lose weight. When I hug him he feels like skin and bones. It makes me sad. He's down to the weight he was last in high school. I do my best to fatten him up but he often isn't hungry and has lost his taste buds. Nothing tastes good to him anymore. Mike was always a lover of food. He hates that he can't enjoy eating anymore. I hate seeing him loosing weight it scares me... His doctor isn't concerned about his weight right now. He thinks he is still at a healthy weight.  I am just not used to him not eating as much...

Beach Date

Of course we wish that his tumor would disappear and everything would go away and we could get on with our lives. For now we hope and pray for a miracle and live life the best we can. We still struggle everyday. Between the two of us one of us always isn't feeling well which makes our time together difficult. We spend every day and night together but most of the time we are just moving through the motions. We lack the quality time together as a couple and as newlyweds. Even simple tasks of going out to dinner together triggers anxiety in one of us or sometimes both of us. Instead of enjoying time together we were spending it worrying about one another and popping Ativan to calm us down. Anxiety has become a constant visitor in our lives... it's expected we understand but it still doesn't make it any easier. Mike has had a hard time with accepting the fact that anxiety often gets the best of him. Before he was diagnosed he had never experienced it and wasn't always a believer in it. The first few months of treatment he really struggled with the amounts of pills he now had to take every day. His anxiety got so bad it kept us from leaving our house at times. He has come to understand that it is a real feeling and is something that he has to live with. In the beginning he was against having to take more pills. Around this time I struggled to sleep every night. Between my chronic illness and Mike's diagnosis it left me many sleepless nights and often days of feeling like a zombie. My doctor prescribed me some anxiety medication to help me sleep at night. Now I can't get a good nights sleep with out it. Mike saw how it helped me and he too started to take a prescription as well. He is more accepting and now understands how real and how scary anxiety can be. Previously we both were strong believers in overcoming hard times without medication but we have now come to understand that it is okay that we need it.   
For now we are spending our time resting up. Like everyone else we wish this cold weather would go away so we can get back to working when we can. Surprisingly those days we can wake up and go to work help make us feel the most normal.
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Monday, February 9, 2015

Good news!

Due to another blizzard today it prevented us from going into Dana Farber for Mike's treatment. We called the doctor to ask what he would like to do. We were also anxious because we have been waiting for his results from his scan last Tuesday. His doctor said that he was happy with his scan and that things were continuing to shrink!!! We were very happy to hear this. Great news! He also said that we could come in tomorrow for treatment at a lower dose or if we felt comfortable we could skip his treatment this week until we got back from our trip. We were a little hesitant at first but decided to skip so he would feel well enough to travel. Today we finally got the chance to breath a little easier and look forward to spending quality time with our family on vacation!


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Tuesday, February 3, 2015

Today Sucked

Today Mike had his rescheduled CT scan to see how his Canceras taking to the chemo. I woke up with a stiff neck and in a lot of pain. Like everyone else I shoveled all the snow off our back deck. I'm assuming that's what gave me the neck ache. Mike's scan was at Brigham and Women's. His appointment was scheduled for 3:45pm but we had to be there for 2:45pm. We left the house at 1:15pm to pick up his dad. We expected to be there super early but why would things go our way... Instead we got stuck in the gridlock on Boston. We were on Storrow for close to two hours. We were all frustrated but there was nothing we could do. Mike was about ready to give up and drive home. I begged him not to because I didn't want to have to come back again. After thinking we would be 40 minutes early we ended up being over an hour late. Mike forgot to take his meds this morning which he never forgets. He was having a lot of pain and discomfort. Lesson learned keep all meds on us in the future. The scan was at Brighams because that was the only place they had an opening after we cancelled the first time due to weather. We parked at Dana Farber and used the tunnels to get to Brigham and Women's. After searching the long hallways... up and down in the elevators and being sent in different directions we finally found it. We then dealt with some insurance coverage issues and registration hassles. I was convinced Mike was pushed past his limit and was going to leave. I was holding back tears from all the frustration. I kept telling myself not here not now... it could be worse. He ended up hanging in there... he drank the nasty contrast drink and had his scan. While he was in his scan his dad and I watched the news. They were showing images from the news helicopters that we were watching while we were stuck in traffic. Apparently all the snow piled up was to blame for the traffic. Things didn't look any better. We walked to a nearby food court and ate dinner before getting back on the road. 

The ride home wasn't too bad. We both couldn't wait to get home and crawl into bed. After the day's frustration I am glad it's over. The scanxity now sets in until next week when we get the results. Cancer you suck thanks for souring another day of our lives.


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