Surgery and return to the day hospital

4 Aug

Wednesday was the big day; the day that I had my port put in. At first I was very nervous about the operation but it quickly became obvious that the procedure is very routine and that there’s not a lot to be worried about. At 7:30 AM my Dad and I checked in with interventional radiology. Very quickly we were taken back to the sedation unit of the interventional radiology suite. Just like with chemo I began the process with a nurse taking my vitals. Afterwards the nurse took me back to my own simple room where I had to wipe myself down before changing into scrubs. Finally, the nurses gave me an IV. Luckily they were able to insert the IV at my elbow. I doubt they would’ve been able to find a vein anywhere else! Finally after I was finished being physically prepped for surgery, the nurse practitioner came back to go through her final checklist. She mostly went over preexisting conditions. Luckily, besides a brain tumor of course, I don’t have any preexisting conditions so my dad signed off on the surgery and I was given the green light.

I was supposed to go into surgery at 9:30. However, the surgeon was busy so I didn’t end up going into surgery until around 10:30. Before I was wheeled back to the OR one of the doctors came back to talk to my dad and I about some of the after effects of the surgery and the deep sedation. Finally two nurses wheeled me back to the OR. Due to the fact that the surgeon was running a little late, I was waiting and talking with the nurses back in the OR for about twenty minutes before the operation started. They were extremely friendly and it was very comforting to see how relaxed they were. More than anything they gave off the impression that they’ve placed tons of ports and that I’m really not that special.

The next thing I knew I woke up in the same room where the day had started. My dad was sitting there with me and in the grand scheme of things, I didn’t feel that bad. It took me awhile before I was ready to stand up and walk. However, once I did get up I was almost immediately given permission to leave the hospital. The nurses insisted that I rode down to the parking garage with my dad in a wheelchair, however, after that I was on my own again.

The port itself hasn’t been too bad. It was definitely uncomfortable the first couple of days, but now I’m starting to get used to it. It’s been tough not being able to take a real shower, and the site of the incision has been a little itchy as it heals but that’s about it!

The port really did help makes things easy the following day when I stated my maintenance period chemo treatments. Like always the nurses started by taking my vitals. Afterwards I was called back to the room where the nurses would normally put in my IV. This time all they had to do was draw blood. This was literally painless because the surgeon left a line into the port the day before when I had my surgery. This meant that the nurses didn’t even have to access the port to draw blood.

Eventually I was sent back to the waiting room and I began bracing myself for the normal prolonged wait. However, it was only about thirty minutes before I was called back to see my oncologist! Record time! The meeting was very regular. We basically went over some of the restrictions that go along with the first week of having a port. Afterwards I was taking back to the day hospital to begin my treatment.

The nurses decided to start my treatment with Benadryl and a precaution to a small reaction I had in the tenth week of my intensive. One thing that I had heard before about Benadryl is that it either puts you straight to sleep or makes you very agitated. The last time I had Benadryl it made me sleepy. However, unfortunately this time it made me very agitated.  It was hard to stay still and I felt like I wanted to jump out of my skin. Luckily after about twenty minutes the Ativan kicked in and I fell asleep again.

When I next woke up, my chemo regiment was all finished for the day. The only thing that was left to do was for the nurse to take the needle out of my port. This was pretty painful. However, she reassured me that the port was extra sensitive because it was brand new and that the following week shouldn’t be nearly as bad. My dad and I packed up our stuff and made our way home. Over the days that followed my treatment I was feeling pretty sick. I can’t help but think that having a brand new port had something to do with it. Luckily that’s all passed now and I can enjoy the next few days before my next round of treatment. Right now I am on my way down to DC to set up my room before I make the move permanently later this month.

As always, thank you for following my journey. If you have any questions or anything you’d like to know, please don’t hesitate to ask.

-Josh

Tags: , , , , , , ,

Back to the Hospital!

31 Jul

Well it’s been great to say that I haven’t had a lot to post about of the past few days. My family was able to take a much needed vacation in beautiful Kiawah Island, SC. Now that we’re home is time to get back into the chemo routine.

Tomorrow is a big day because I’m having a port put in. It became very obvious during the last couple of my treatments during the intensive period that I was going to need a port. On the very last week of the intensive, week 10, I had to receive three different IVs before they found a vein that worked! The nurses even called out as they struggled to find a vein, “thank god you’re getting a port!”

Check in tomorrow for the surgery is 7:30 AM. The surgery is done by the interventional radiologists. At first it was scary to hear that the surgery was done by interventional radiology, however, it quickly became obvious that the interventional radiologists are very skilled and the best people to put in the port. Check in to check out is supposed to be somewhere around six hours. Once I’m checked in at 7:30 they take my vitals and prep me for surgery. If everything goes to plan, I’ll go into surgery around 9:30. The surgery is expected to take around an hour and a half.

Unlike when adults have ports put in, I’m fully sedated during my surgery. However, unlike my neurosurgery they don’t use anesthesia. Instead they use deep sedation. I’m not exactly sure what the difference is. I know it means that recovery time is shorted, but I’m not sure that the other big differences are. The side effects are expected to be pretty minor. I’m expected to have some discomfort but nothing major. Also, I know that I cannot submerge the area where the port is placed for a week and I cannot do any intense physical activity. They’re going to leave a line in the port, that way when I have chemo on Thursday, the nurses can use the port.

Hopefully everything goes to plan. I’ll fill everyone in on how things went on Friday after my surgery and my first chemo of the maintenance period. Thanks again for following my journey and for all the amazing support.

Tags: , , , , ,

More good news!

19 Jul

More good news today! This afternoon was the consultation with my oncologist to get a little more information on what the MRI showed. As I said before the MRI showed that the tumor has shrunken a little but more than anything it has stopped growing.

The meeting also have us more of an insight into how the rest of my brain was reacting to the tumor. When I had my very first MRI, one of the side effects of the tumor was that it was causing the fluid pools in my brain to build up. This along with the pressure the tumor, double vision, and of course the tumor, was not creating a good situation for my brain. This most recent MRI shows that the fluid pools in my head have been draining normally and that there is no longer buildup.

One of the things my oncologist did talk about is how I’ll be getting MRIs for the rest of my life! Over the next year I’ll be getting an MRI every three months. Once the treatment is over then I’ll be getting an MRI every six months for the next five years, and finally after that I’ll be getting one MRI every year for the rest of my life. Fun, right?!

In the image below you can see the tumor is the giant white growth in the middle. The fluid pools are the two black areas on each side of my brain. As you can see in the second image, they are much smaller. You can also see that the tumor is a bit smaller.

As you can see here the fluid pools have reduced and more than anything the tumor is a bit smaller!

As you can see here the fluid pools have reduced and more than anything the tumor is a bit smaller!

All in all we received a lot of good news today. I want to take another moment to thank everyone who has been following my journey and sending so much greatly appreciated support.

-Josh

Tags: , , ,

Good news!

13 Jul

This morning my family and I got some very good news! We heard the results of the MRI and it showed that the tumor had stopped growing and might have even shrunk a little. This means that the chemo has been working well and that I’m clear to go onto the next step of my treatment. The next step is called the maintenance period where I have chemo for a month straight and then have two weeks off. This maintenance period lasts for almost a year.  The next big step, however, of my treatment will be getting a port later this month before I start the next stage of treatment. Getting a port means that I don’t have to get IVs when I go to the hospital.

Thank you to everyone who has been following my journey. I really appreciate your support.

-Josh

Tags: , , ,

Big Day Tomorrow

10 Jul

Just wanted to let everyone who is following my “journey” know that tomorrow is my big MRI. The purpose of the MRI is to see if the ten week intensive period has been working. We should get the results sometime later this week and I’ll post them as soon as I know.

-Josh

Tags: , ,

Chemotherapy Week 10; Grand Finale

5 Jul

Well I’ve made it! The ten week intensive period is over! However, it finished with a bang. It was a week filled with many little issues. One thing that you should know before I get into the details of the treatment was that my family was planning on going down to DC for the holiday. My dad booked a 2:10 PM train out of 30th Street Station. This meant that if we were going to make our train, I’d have to be finished my treatment by 1:30 PM.

When I arrived we checked in like normal. We decided to arrive early hoping that it would help speed up the day. This week, because my treatment was a day earlier due to fourth of July, triage was located on the other side of the day hospital. I was surprised how much larger of a triage area there was on the opposite side of the oncology floor. The nurses took my vitals and then my first big issue of the day arrived. Getting an IV was a disaster. Three different nurses were working together to find a possible vein for my IV. They used various hot packs and tourniquets hoping my veins would pop out. However, they didn’t. They inserted two different failed IVs, each in opposite hands, before they successfully found a vein. I received a total of three IVs, however, only the last one worked. You know what they say: third times the charm.

Finding a useable vein ate up quite a lot of time and we missed the first appointment of the day with my oncologist. Luckily we didn’t have to wait long before we were called back for my consultation. The meeting was quick. My blood counts looked great and there weren’t any big concerns. We took a few minutes to talk about the next upcoming steps in my treatment like the next MRI and receiving a port. However, all in all the meeting was quick and easy.

By the time we went back to the day hospital and I started my chemo it was around 11:00 AM. Everything was looking as though it was going to run smoothly and that we’d make our train easily. I ate lunch and then feel asleep like normal. When I woke up the nurse was preparing to flush my IV and finish everything up. That’s when I noticed something on my wrist. Next to my joint there was a giant hive that had suddenly shown up. When I first found it I called over the nurse and she confirmed our notion that this was something unusual. She immediately called over other nurses and even an oncologist to check it out. It was pulsating, however, it didn’t hurt and it seemed to be the only one. As the team of doctors and nurses began deciding what to do more hives began popping up on my hand. The doctors and nurses decided to give me a dose of Benadyrl hoping it would calm down the reaction. Catching our train was now looking unlikely. One nurse even told us that we’d need to reschedule our train.

About ten minutes after I was given the Benadryl the hives seemed to have calmed down and it looked like we might just make our train after all. The nurse decided that I was okay to leave the hospital. I would have to continue to take Benadryl for the next 24 hours.

We ran to our car and began rushing to the train station. I feel asleep on the car ride to the station as a result of the Benadryl. We arrived at the train station and began running for our train. I was half asleep making everything a little more difficult. The train was waiting for us and we made it onboard with just a minute or two to spare. As soon as we got on the train I fell asleep. I was exhausted.

Over the next few hours following my final treatment the hives totally disappeared. We had a great fourth of July down in DC and it was even more enjoyable knowing that I’d have a month or so now to get ready for the maintenance treatments. I am very glad to be finished the 10 week intensive. I kept all of the hospital bands from my treatment just as a reminder.

The 10 wristbands from my 10 intensive treatments

The 10 wristbands from my 10 intensive treatments

I hope you all had a great forth of July. If you have any questions, just let me know.

-Josh

Tags: , , ,

Chemotherapy Week 9; Family Outing

28 Jun

Chemo started later this week. Normally my checkin is scheduled for around 9:00 AM. This week I didn’t need to arrive until 10:30 AM because my oncologist was doing rounds down in the main hospital. However, once we did arrive I checked in like normal and proceeded to have my vitals taken. When the nurse went to put in my IV she searched my hands for a possible vein. In the end she decided to leave my hands alone and actually insert the IV right above my elbow. I found this very surprising considering that I knew the nurses weren’t allowed to insert at the elbow with a chemo as toxic as Vancristine. I guess right above the elbow is okay! I did, however, find having the IV right above my elbow much more uncomfortable.

Here you can see the nurse putting the IV in right about my elbow instead of in my hand.

Here you can see the nurse putting the IV in right about my elbow instead of in my hand.

As I was leaving the room where the nurse inserted the IV I asked how long it would be before I saw my oncologist. They told me that there was only one person in front of me. However, she wasn’t even back from the main hospital yet. I sat down and the waiting game began. Eventually the nurse practitioner in training came over to let me know that my oncologist was running quite late. However, she said that she’d be able to do my examination if I’d like as to speed up the process. I hopped on this offer knowing she is a very thorough nurse and that I’d be willing to do anything to get things rolling.

When we went back to the examination room she asked if I’d be willing to allow her supervisor to sit in on the exam. Still being in training she had to have her supervisor look in on an exam. I was totally fine with this; I knew she’d be great. The exam began like normal and about halfway through my normal oncologist arrived. It was an oncology party! There must have been about five people in the little exam room. One of the things that was different about this week was that some of my counts had dropped more than I’d previously seen from the week beforehand. We talked about them and made sure there wasn’t anything to worry about. The nurse let me know that even know my counts had dropped, they were still extremely high and there was nothing to worry about.

That’s when I went back to the day hospital to begin my treatment. This week I was also given an anti-nausea patch along with the Zofran and the Ativan. Another difference in this week’s treatment was that my mom and brother accompanied me during treatment instead of my father. It was really great for them to be there with me and to see what the whole process is like. It became really obvious that I had really mastered the whole process. Being with family members who hadn’t been through the process meant that I really took the lead. I knew this process well! I have it down! The number of people I knew at the hospital also really stuck out. I knew tons of people around the hospital who were greeting me and checking it. At that moment one thing became apparent; I was no longer a beginner to this whole process. I’m a regular now. During the chemo one of the social workers came to talk to my family and I to discuss any possible changes that I’d like to see in the future. They wanted some feed back and I really thought it was awesome that they’re always looking to improve.

As always, if you have any questions let me know. Thanks for reading.

-Josh

Tags: , , , , ,

Chemotherapy Week 8; IV Issues

23 Jun

This week was almost exactly the same as last week except for one major exception. I arrived and checked in like normal, then nurses took my vitals. However, issues occurred when my nurse went to put in my IV. Unlike other days the nurse couldn’t find a vein for the IV. She searched my hands using tourniquets and hot packs, however she couldn’t find any obvious veins. She even searched my arms which is something they hadn’t previously done. They couldn’t go in at my elbow because apparently that’s very risky with the highly toxic Vancristine.

Finally the nurse chose a vein in my left hand that seemed to be somewhat hidden, however, she thought it would do the job. She wanted to use my left hand because my right was still bruised from the previous week and she wanted to give it a chance to recover. As soon as the needle pierced my hand the vein seemed to vanish. The nurse began “digging” around in my hand attempting to find the vein. Halfway through this process another nurse, looking to use the room to put in another patient’s IV, came in. After some more “digging” the other nurse took over. She was able to pierce the vein, however, when the IV went into the vein hardly any blood came out. The nurses decided that because the Vancristine is so toxic, and that the vein wasn’t responding well, they wouldn’t be able to use it.

Finally the second nurse found a much smaller vein in my right hand, the one they wanted to give a week to recover, and was able to insert the IV. There was very good blood flow and everything was working well. However, because the IV was in a much smaller vein I could easily feel it and it was slightly more irritable.

After waiting about an hour and a half, I met with my oncologist. I began talking with her about my vein and the possibility of getting a port. As I’ve said before, I really wanted to avoid getting a port. I didn’t want to have another surgery. However getting a port now seemed inevitable. I knew that if I had to get a port,then I just wanted to get it over with. My oncologist encouraged my dad and I to wait two more weeks until the intensive period was finished. She encouraged me to do so because once the intensive was finished, and I had my next MRI, we would know more about how the tumor is reacting. We decided that if this form of chemo was working, then it would be a good idea to receive a port. However, the reason she was having me wait was if this form of chemo wasn’t working. If this form of chemo is not working, then I would only have to get an IV every two weeks and getting a port might be pointless. The rest of the chemo in the second option would be administered orally.

Later on that day when I was in the day hospital, the nurse who put in my IV stopped by. She said that she overheard my discussion with the oncologist and that she thought I would be able to make it through another two weeks. She said that even know putting in my IV was painful, they didn’t even need to call in the IV specialists. I actually found this reassuring because I imagined that putting in the IV was more frustrating for my nurses than it was for me. I guess not!

So now I’m waiting. Hopefully the chemo is working. If it is then I’ll be getting a port before the maintenance period starts. Sorry I was a little late posting this week. As always if you have any questions or anything you’d like to hear about, please let me know.

-Josh

Tags: , , , , , ,

Chemotherapy Week 7; Back to the Carboplatin

15 Jun

Well unfortunately after having two very manageable doses of chemo, I had to go back to the full regiment this week. Just like every other week we arrived at the hospital where we checked in and then the nurses proceeded to take my vitals and give me my IV. However, the most “painful” part of the day was waiting to meet with my oncologist. My dad and I had to wait for just over two hours to see my oncologist! We never mind waiting, because it just means that she is being very thorough, however it just makes the day even longer and more tedious.

Finally when I met with my oncologist she let me know that my blood counts were looking amazing. The only thing that was different about my normal examination was that my reflexes were totally gone! The previous week it because obvious that my reflexes were declining, however, this week they were totally defunct! The oncologist said that with most people they come back, however, even if they didn’t as long as I had full control over my feet then I would be fine.

The biggest thing that was different about this week’s treatment, was that my oncologist added Adivan to my regiment. Adivan is a drug normally used as anxiety medicine. However, in my situation it’s used to prevent nausea. The logic behind using Adivan is that the nausea I feel each week isn’t actually coming from my stomach, it’s coming from signals in my brain. Therefore, if I can use a drug like Adivan to calm my brain down I’m less likely to experience nausea.

Once I finally went back to the day hospital I received the Zofran first and the nurses warned me to eat my lunch before the Adivan was in my system. I ate my lunch as I was told. Next thing you knew, I was out! The Adivan put me straight to sleep! When I next woke up, the chemo was done for the day!

It was an average day, we arrived at the hospital at about 9:20 AM and left at 3:00 PM. I am very happy knowing I only have three weeks left in the intensive.

Today, the day after I had the chemo, I woke up in the morning feeling rotten. As a result, hoping to deal with the nausea, I took a Zofran and a Adivan. The Adivan caused me to fall asleep around 8:30AM and I didn’t wake up again until 2:20 PM! That medicine works wonders! I also woke up feeling much better than I was feeling when I feel asleep. Sleep is magical.

As always if you have any questions, please feel free to ask! I really appreciate all your support!

-Josh

Tags: , , , , , , ,

Chemotherapy Week 6; Quick & Easy!

7 Jun

This week’s round of chemotherapy was the fastest yet! This was a big surprise to me considering last week was so much faster than the others. This week might have been the fastest yet because I had an 8:30 AM appointment which meant that I was practically the first patient to be treated.

When I arrived at oncology we checked in and then was almost immediately taken back to have my vitals checked. As a nurse was taking my vitals another nurse popped her head in and said “once you’re done, come next door and I’ll do your IV.” This made me happy because in the past I’ve had days where they take my vitals and then I have to wait a half hour to get my IV, just prolonging the day, however that wasn’t happening this week!

As soon as I had gotten my IV I went back out into the waiting room and began using my laptop as I was expecting a long wait like the week beforehand. However, after only about thirty minutes (compared to an hour and forty-five minutes the week before) the nurse practitioner came out to come and get my dad and I. We were meeting with a nurse practitioner (in training) this week because my normal oncologist wasn’t in today. She was very nice and obviously had a very good understanding of what she was doing. It was interesting to see how being a nurse practitioner in training she did a much more thorough check than I was used to. She review everything from diet, to feeling, to reactions from the week beforehand. I found it very impressive. One thing that was different this week from my other exams was that there was an obvious decrease in my reflexes. This is something that is apparently very normal. However, I just found it bizarre!

Finally after finishing with the nurse practitioner we went back out into the waiting room for about fifteen minutes before I was called to receive my chemo. Because the treatment was expected to take no time at all (like the previous week) I was just taken into one of the rooms where the nurses put in the IVs. The chemo itself and the flush took less than fifteen minutes! New record!!! Afterwards they took out my IV and I was free to go.

Today was easily the smoothest and fastest treatment I’ve had! We were in and out in just over two hours! I have to say that I’m not looking forward to next week when I’m back to both chemos (the Vancristine and the Carboplatin) and I’ll be back in the day hospital for an all day ordeal. 😦

Thanks to everyone for reading and following my journey. If you have any questions, please feel free to ask and I’ll do my best to respond.

-Josh

Tags: , , ,

← Older Entries
Newer Entries →