Tag Archives: oncology

No More Needles to the Chest; Last Infusion!

22 Aug

Last time I updated all my amazing readers on the progress of my journey, I was in the home stretch. I was away with my grandmother enjoyed some R&R before heading back to DC to finish up the school year along with my last eight rounds of chemotherapy. Upon my return to DC, I had my next MRI which revealed no increased growth or any change. This meant that my family and I were cleared to finish up my treatment of Vancristine and Carboplatin and be done for the foreseeable future.

Well, I have some very good news. On June 12th at about 5:30pm, I finished my last chemotherapy infusion at Children’s National Medical Center in DC!

The last roughly three months of treatment did, however, come with a few hiccups. As I proceeded through my last infusions, my reaction to the chemo became increasingly worse each week. My ability to bounce back from each infusion was nothing compared to what it was when I first started. Although this was somewhat expected, it was still quite unpleasant. Around the time of my last post, I would do an infusion on Thursday afternoon and if I took my normal prescriptions, I would be well enough to force myself through an abbreviated school day on Friday and then I would be fine by Sunday afternoon. This slowly changed and by then time I reached my forth-to-last infusion my normal cocktail of drugs for coping with the side-effects just wasn’t cutting it. During that forth-to-last infusion I was extremely sick, didn’t make it to school that Friday or Monday, and just couldn’t eat anything.

It was at this point my doctors added a drug called Emend to my regiment.The effect of the drug, as it was described to my parents and I, is that it helps the other drugs that counter the effects of the chemo have an increased impact. At first I only took Emend while I was in the hospital as one of my pre-meds before doing an infusion. However, once the side effects started to become increasingly worse (forth-to-last infusion sort of worse) my doctors wrote out a prescription to take the drug at home. It’s always taken in pill form, even when in the hospital. The prescription did come with a slight warning, which was that many types of insurance don’t cover the drug and it can be frightfully expensive if you have to pay for it out-of-pocket. Luckily, I have one of the types of insurance that does cover it. This is one of the things I’m extremely thankful for: amazing health care as well as being in a situation where my family can afford fantastic health coverage.

It was also around the time of when we added the Emend that my family and I had a serious talk with my oncologist, Dr. R, about finishing treatment. What he told us was that we would see what my reaction was like once the Emend was added, but that if the drug didn’t work we would just stop treatment two of three infusions short of the total plan. Apparently with all the drugs I was taking at the time, Emend was basically the last thing they could add to help deal with the side-effects. At that point, with only a few infusions to go, there would be no point in finishing out the last few if they were still making me so sick. As he described it, there’s no way of knowing exactly how many infusions it takes to kill this sort of tumor. They think it’s somewhere around forty-two, but it could be less or more and that’s why there’s no crucial reason to do exactly forty-one.

Luckily the Emend had a big impact, and on June 12th I arrived at the hospital with my entire family, including my grandmother visiting from overseas, for my last infusion! I was very happy to make it to my last infusion; of course I didn’t want to be sick, but I also wanted to finish what I had set out to complete. My family and I brought in a big cake to thank my entire team at the hospital, everyone from doctors to nurses and everyone else were all so amazing. We were able to take a photo of the cake (only one piece short of the completed thing).

It was a fantastic feeling finishing treatment. It was also, however, sad saying goodbye (even if only temporarily) to such an amazing team of people. It was at that time that my entire family and I looked back on being diagnosed sixteen months beforehand, being admitted to the ICU and having neurosurgery and then completing forty-one rounds of chemo between two different cities, hospitals, and teams.

This was the cake we brought in to thank the entire team at CNMC. Everyone got a slice!

This was the cake we brought in to thank the entire team at CNMC. Everyone got a slice! Amazingly, Dr. Mason, who was the first person I had contact with at CNMC, was doing his residency in neuro-oncology. His last day of residency was also the day of my last infusion!

Dr. Mason and I. His last day of residency, my last infusion.

Dr. Mason and I. His last day of residency, my last infusion.

A photo with my oncologist and my nurse practitioner. Couldn't have done it without these amazing professionals!

A photo with my oncologist and my nurse practitioner. Couldn’t have done it without these amazing professional, people!

Exactly a week after my last infusion I decided to count up all of the hospital bands which I had saved from my journey. To do the math: 1 brain tumor = 16 months of treatment = 6 MRIs (at the time) = 41 rounds of chemo = 51 hospital bands.

Hospital bands galore!

51 bands from both Philly and DC. Everything from MRIs to surgeries to chemotherapy infusions!

All that was left to be done was have my port removed and a few days later we received the call that on the 27th of June I would be going in for day surgery to have my port removed. Interestingly, most people don’t have their ports removed until they get two clean scans back. However, Dr. R told us that if the tumor, Eugene, was to begin growing again I would most likely start taking an oral drug instead of doing infusions so we decided to take it out.

Therefore, early on the morning of the 27th, we made the trip out to the hospital where I was admitted and had the port taken out. One of my big requests was that I could take a photo with the surgeons before going under and that they would take a photo of the port for me once it was taken out of my chest, which they did!

I took a selfie with the surgeons right before going under. Don't worry, they were super cool with it.

I took a selfie with the surgeons right before going under. Don’t worry, they were super cool with it.

On of the nurses took this photo as they were putting me to sleep. Thumbs up!

On of the nurses took this photo as they were putting me to sleep. Thumbs up!

Photo taken by the nurse during surgery.

Photo taken by the nurse during surgery.

This is a photo of the port that was in my chest for 11 months!

This is a photo of the port that was in my chest for 11 months! This was taken in the OR right after they took it out. If you zoom in you can see the little needle holes from when they accessed the port before doing an infusion.

A week after surgery I met with Dr. A, the neuro-ophthalmologist. I did a visual-field test in addition to having some photos of the back of my eyes taken. What Dr. A then told us is that when people have the type of cranial swelling and double vision like I experienced when first diagnosed they expect to see some sort of retinal-nerve damage and vision loss. Amazingly, he himself seemed almost shocked when telling me this, I have no retinal-nerve damage or vision loss.

Finally in mid-July I had an MRI and a follow up with my neurologist Dr. P. The MRI showed no change whatsoever meaning I was given the final clearing to come off treatment! Apparently, Vancristine and Carboplatin can have a really nasty effect on teenagers causing nerve damage and he himself seemed really surprised that I was able to finish all sixteen months of treatment.

I decided to wait until now to update you all on my journey because not only have I been extremely busy with a chemo-free couple of weeks, but I also wanted to make sure everything was looked good before writing this post. Ultimately, I am truly blessed. I had some of the most amazing care, doctors, nurses, and support team, both in and out of the hospital, that I ever could have asked for and I can’t thank them enough. Is it unfortunate that I have a brain tumor? Of course. But I also take pride in knowing that I was able to overcome many obstacles to get to where I am today, and I couldn’t have done it without so many amazing and talented people. I have to especially thank my teams at CHOP and CNMC, my school, my family, my brother and my parents for everything they did to help me get through a challenging year of growth.

Many people have asked me: is this the end of Josh’s Journey? Of course not. Eugene the brain tumor will always be there, and it’s always something I am going to have to monitor and be careful of. Over the next two years I will be having MRIs every three-months in addition to meeting with the neuro-ophthalmologist and the neuro-oncology team. I’ll make sure to update you all on my journey after each MRI to let you know how everything is going.

I can’t thank everyone who has followed my journey enough. Your support has meant the world to me and helped me get through a testing time. I’m hoping to soon be launching a campaign to help bring snacks and food to kids who are doing chemotherapy infusions so please continue checking in for news on that. Below I’ve included a little timeline of photos from my journey.

Straight out of neurosurgery back at CHOP. This was when things all started.

Straight out of neurosurgery back at CHOP. This was when things all started.

This was taken the day of my first infusion at CHOP.

My first infusion at CHOP.

Me with Dr. B, my oncologist at CHOP. At this point I had finished 14 rounds of chemo and was transferring to CNMC in DC.

Me with Dr. B, my oncologist at CHOP. At this point I had finished 14 rounds of chemo and was transferring to CNMC in DC.

This is an eye exam; taking a photo of my retinal nerve.

This is an eye exam; taking a photo of my retinal nerve.

Photo comparing Eugene from one MRI to the next.

Photo comparing Eugene from one MRI to the next.

One of the nurses putting an IV in my arm before having an MRI!

One of the nurses putting an IV in my arm before having an MRI! Gotta stay positive!

Getting cozy for my last infusion (June 12th, 2014)!

Getting cozy for my last infusion (June 12th, 2014)!

Selfie with Dad right before going in for surgery to have the port taken out.

Selfie with Dad right before going in for surgery to have the port taken out.

Finally, one last photo of Eugene the brain-tumor!

Finally, one last photo of Eugene the brain-tumor!

Again, thank you.

Tags: , , , , , , ,

Update, The Final Stretch

27 Mar

To begin, I want to say that I really appreciate everyone’s patience with my lack of posts. It’s been an extremely busy last couple of months.The last time I found the time to post was Winter Break back in December and now it’s Spring Break, which I hope speaks to how busy I’ve been.

Right now I’m away with my Grandmother, and we’re having an amazing time. Even when I’m not away and just in school I’m constantly reminded of how lucky and blessed I am. I’m blessed to have treatment that’s going very well, I’m blessed to have an amazing family, support network and education and I’m also blessed to have people following my story.

In the past couple of months my treatment has been mostly uneventful. I’ve now completed thirty-three of my forty-one treatments, which means I only have eight treatments left. I’d like to think that I’m now in the final stretch! Most of my treatments have gone very smoothly. Normally, I have my infusion of Vincristine and Carboplatin on Thursday afternoons. I normally feel pretty sick afterwards but then I’m able to bounce back and feel okay by the end of the weekend. Lucky I’m still able to go to my classes on Fridays.

One of the few “eventful” moments happened back in mid-January. I had returned from vacation with my family and was back in DC. I was in the middle of exams and studying like crazy. One morning I woke up and within an hour or so had a very strong migraine. I had just recently had an MRI and the migraine couldn’t help but make my mom and I suspicious that the pressure in my head had finally become an issue. We called the hospital and they look at the MRI. The MRI didn’t show increased swelling. Instead, they assumed that the rigorous study and particularly time spent in front of screens is what caused the migraine. My doctors then stressed the importance of letting one’s eyes rest to prevent eye strain, which is what I was going through.

The only other “eventful” moment was during my most recent set (meaning a group of four weekly infusions) when during my first infusion I “bounced back” much less effectively than expected. Normally during my first infusion after a two week break I react normally if not somewhat better than after other infusions. This was a little concerning. However, after talking with my doctors it just seemed to be a strange outlier. The following week I reacted totally normally.

In the next few weeks I have my next MRI and then I’ll be meeting with my entire team which includes the neurologist and the neuro-ophthalmologist. This means an entire day spent at the hospital. We’re hoping for good results. I’ll hopefully find time to post and fill you all in on the results.

Again, I want to thank everyone who’s following my journey. Your support and well as your patience has been incredible.

Tags: , , , , , , ,

First Appointment at CNMC

1 Sep

Last Thursday was my first appointment at CNMC (Children’s National Medical Center) in Washington, DC. I was not going in for chemo, but just going in to become a part of the CNMC system and to meet the doctors. The day began at around 11:00am when my parents and I arrived at the hospital. We were scheduled to start the day by meeting with the oncology team who would discuss medical history and how the oncology process works at CNMC. Then afterwards we would meet with Dr. P, a well renowned neuro-oncologist.

When we first arrived my dad had to fill out a ton of paperwork. This was regardless of the fact that all of my medical records were sent down from CHOP. Finally after about a half hour of paperwork we were called back to begin the appointments. The appointments began with one of the oncology nurses taking my vitals so that in the future they would have a baseline to refer to and compare. Then we met with Dr. M, a neuro-oncology resident, who took down my whole story and medical history. Afterwards, he let me know that the schedule had changed a little and that Dr. P wanted to meet with my parents and I before we saw the oncology team.

Dr. M then took us downstairs to the neurology suite where Dr. P’s office was located. When Dr. P arrived he did a very brief exam. He already had the medical exam that Dr. M had done to compare. Afterwards he began talking about my treatment with my parents and I. To my surprise he quickly revealed that the combination of Vancristine and Carboplatin, the two chemotherapies I’ve been using aren’t actually the two that he normally recommends for children my age. He revealed that this combination shows very good results in young children but less so in teenagers. This came as a surprise to me because I knew from my oncologist at CHOP that Dr. P was a pioneer in this chemotherapy-cocktail. He quickly began talking about different treatments; everything from other simple chemotherapies to radiation. I quickly began freaking out because I was very content with my treatment and I was under the impression that things were going really well.

Another thing that was scary is Dr. P reviewed my two MRIs and showed us how in the second MRI there’s a flair coming out of the tumor. Apparently it’s very unlikely that the flair could’ve grown when the tumor hasn’t. It most likely came up in the second MRI because the pressure was released in my brain causing the flair to show. However, what Dr. P did say is that if in my next MRI (five weeks from now) the flair appears to have grown, he would most likely change treatments. In addition to the flair, he talked about how the MRI showed that I have an abnormality in my brain. This abnormality is what’s causing the tumor and as a result could be something that would need treatment in the future.

At this point in the meeting I was pretty terrified. I did not want to change treatments and before the appointment I wasn’t under the impression that I would have to. Everything really came as a shock. Looking back on the appointment now I think I overreacted a little. What Dr. P was explaining was that if the treatment took a turn for the worst there are still many more other options. What was so scary is that his way of describing everything wasn’t too great and as a result he gave off the impression he wanted to change treatments. Regardless of the scare the message at the end of the meeting was that we were going to stick with this treatment until we had a reason we’d have to do otherwise.

After that meeting I went back up to the oncology floor where I met with the oncology team. The majority of the discussion revolved around recapping the meeting with Dr. P. Frankly, a large portion of the meeting was spent calming myself down; this was a team effort. Along with Dr. M we met with a nurse practitioner and another neuro-oncologist. They described how the process takes place every Thursday when I come in for my treatment. Unlike CHOP the process is only scheduled to take between two and three hours from start to finish. This means it’ll be easy to do my treatment after school as then be in class the following day. Also, they talked about how when I come in for treatment I won’t just meet with one person like I did back in Philadelphia. Instead I’ll meet with all of these three doctors. The meeting concluded on good terms at around 3:30pm.

I was happy the meeting was over. It was scary to talk about so many much different courses of treatment; specially since I’ve already down fourteen rounds of treatment on one regiment. In the end the important thing to take away from the whole ordeal is that there’s no reason to change treatment and we won’t be changing treatments unless there’s a reason to do so. I look forward to working with the team at CNMC.

Thank you for following my Journey.

-Josh

Tags: , , , ,

Maintenance Round 1 Complete; Sad Day

23 Aug

Well today was my last round of chemo in my first maintenance cycle. In a lot of ways this week way just like last week. However, there were some key differences. When the nurse was accessing my port it was so much less painful than it been any other week. Every week it becomes easier and less painful to access which is really helping to make the process easy and smooth. Another difference between last week’s treatment and today’s treatment is that instead of receiving Vancristine and Carboplatin (the usual cocktail), I only received Carboplatin. Apparently during the maintenance cycles the first three weeks are Vancristine and Carboplatin and then the final week is just Carboplatin. This made the the entire transfusion about a half hour shorter. Also, we went over my opthalmology results and just like the doctors from the suite, my oncologist was shocked with the results. Besides for these three differences, this week and last week was almost exactly the same!

Except……. for the fact that this was my last transfusion at CHOP. Some of you know and others don’t that I am moving to Washington DC in a few days. It was sad saying goodbye to all the amazing people at CHOP, especially my oncologist Dr. B. Over the next few days I’ll be moving down and then meeting with my new doctors at National Children’s Hospital in DC. I have a meet and greet with Dr. P who’s the head neuro-oncologist down at National Children’s and then with members of the oncology team on Tuesday. After that I’ll be able to enjoy the rest of my two weeks off before beginning my second maintenance cycle down in DC.

From what I’ve heard, the process is much different down in DC. Apparently I only meet with the head neuro-oncologist once a cycle (six weeks). Otherwise my exam is done by the nurse-practitioner. I’m not exactly positive regarding how some of the other aspects of my treatment will be different. I know that instead of doing the Vancristine in a 10-15 minute drip like they do at CHOP, National Children’s administers the Vancristine in a 5 minute push. I’ll let you know about some more of the differences on Tuesday.

As for today when I met with my current, incredible oncologist, Dr. B, we talked about the transition and keeping in touch. My dad and I brought he a gift as a thank you. It’s amazing how one person and her team can make something like going through chemotherapy feel so comfortable and easy. Not only was the process easy but over time I learned how to laugh about my situation and just make the best of it. We probably laughed more than you should in an oncology suite. Oh well.  I am going to miss the CHOP oncology team and their kindness, understanding, humor and all around passion for what they do every day.

Dr. B and I during out last exam.

Dr. B and I during out last exam.

Hopefully, the oncology team down in DC is as welcoming, friendly, and humorous. I will definitely miss CHOP and it’s caring people.

Thanks for following my journey. Let me know if you have any questions or anything you’d like to hear about.

-Josh

Tags: , , , , , ,

Maintenance Period 1; Weeks 2 and 3

17 Aug

Hello again everyone. I apologize for not posting last week. I was feeling pretty beat after chemo and never got around to posting. I decided I’d just give a brief overview of the previous week in this posting.

July 8th, Round 2

Everything started normal for week two. I arrived at the day hospital and the place was almost deserted. I don’t know if I’ve even seen it that quite. My dad and I have discovered that if you arrive a half an hour early, you have a much stronger chance of being one of the first people treated. As soon as we checked in I took my registration over to triage where they immediately took my vitals. As soon as they finished taken my vitals I was called into a neighboring room to have my port accessed. I was nervous because it was my first time having the port accessed.

It’s a much different process having a port accessed than getting an IV. When you get an IV, they simply clean the sight where the incision will be and then insert the IV. When having a port accessed I had to wear a face mask and the nurse had to clean the area of the port for thirty seconds before she inserted the needle. Apparently needles for ports come in three different sizes: three-fourths of an inch, an inch, and an inch and a half. Because it was my very first time having a port accessed, they used the three-fourths inch needle. There was still quite a bit of swelling around the port because it was still just a week old. It took the nurse a minute or so to pierce the port. Once she did access the port she took blood for my weekly tests. The line was pretty sluggish getting blood return but it worked just fine.

Almost immediately after the nurse finished accessing my port we were called back to meet with my oncologist. It was definitely looking as though arriving just a half hour early makes a huge difference. The meeting went very smoothly. All my medications and chemotherapies were going to be the same a the week before. After a quick and easy exam from my oncologist we headed back to the day hospital to start my chemo. We were making record time!

Back in the day hospital I quickly began my regiment of medications. Like the previous week I had to take Benadryl. Unfortunately it had a similar effect as the previous week and I was all jumpy. Once again I felt as though I wanted to crawl out of my skin. Once the reaction finally wore off I fell asleep. Because the line was so groggy it took my chemo regiment four hours to finish! Normally my regiment only takes around two hours. Still the four hours passed and I was finished my regiment for the week.  In the grand scheme of things, it was a pretty normal week of treatment.

July 15th, Round 3

Like the previous week we decided to arrive at the hospital a half hour early hoping to beat the rush. When we arrived the hospital was packed! It was one of the busiest mornings I think I’ve ever seen. I turned in my papers to triage, but the place was overflowing with people! After waiting for about twenty minutes (longer then we’d normally wait to go back to triage) one of the nurses came out into the waiting area to get me. She told me that because triage was so packed, she was going to access my port before triage. We went back to a different part of the hospital where I went though the same port accessing routine that I described in the previous week. It was a little less painful this week because the swelling had come down a considerable amount. However, this time the nurse used an inch long needle. You could tell as soon as she used the longer needle that everything was flowing much more easily and that the chemo would be much less difficult going through the line.

After my port was accessed I went back to the waiting room. However, it was then only a few minutes before I was called back to triage. It look as though things had lightened up. As I was going though triage one of the nurses told me to grab my dad as soon as I was done and to go back and meet with my oncologist. This was really surprising because the hospital was packed! Regardless, we weren’t complaining.

When we met with my oncologist things were very routine. My oncologist had a visiting medical student from Austria with her who was extremely nice and interesting to meet. There was one big item on our agenda though: Benadryl. The stuff had made me kinda crazy the previous two weeks and I was really hoping we’d be able to come up with a solution. As soon as we brought it up with my oncologist, she decided that it was unnecessary. I couldn’t have been any happier about this. In my mind no Benadryl is good Benadryl.

After a quick exam I was taken back to the day hospital where I began my treatment. The one inch needle was obviously the way to go because the chemo was moving at it’s regular speed. While I was in the day hospital we met a family with a little four month old baby who has a tumor right behind is eye. I had met them once before. However, this time they gave us the news that the tumor had almost totally calcified! This was amazing news. The family is from Utah and it really put how lucky I am to be living in Philadelphia into perspective. I live near one of the best children’s hospitals in the world and people travel from all around the world to be treated at CHOP. The whole experience has made me feel so blessed.

Thank you for following my journey. I’ll do a better job posting after each week’s treatment.

-Josh

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: , , ,

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: , , , , , , ,

← Older Entries