A bit of a scare, some pain, and getting back to work

So a few things happened this week. Last week, the lump on right side of my neck reappeared. I started to get really worried since the first time the lump appeared, both my oncologists were puzzled, and this time, unlike the first time, the lump was quite firm. I made an appointment with my ENT doctor. After feeling the lump, my ENT doctor was pretty sure it was a secondary tumor. He had his nurses order new MRI scans to get a closer look. He then called my radiation oncologist, and they decided to proceed with a fine needle aspiration biopsy of the lump. When he stuck the needle into the lump, all he got was fluid. I asked, "Is that good or bad?" He responded, "It was not what I expected." I was still not sure if that was good or bad. He then proceeded to call the lump a cyst instead of a tumor, and that's when I realized it was good! The fluid was sent to pathology for closer analysis, but I am hopeful that everything is okay. The MRI scans were canceled.

I had my PEG tube removed this week. Before my appointment with my GI doctor, I was fearful that they would remove the PEG tube by yanking it out. And that's exactly what they did. OUCH! Yes, it was painful, but thank goodness the pain lasted only one minute or so. Doctor said the hole should heal by itself completely in thirty days. My stomach will forever be fused to the front wall of my body.

I have been released by my doctor to return to work on March 16. I'm really looking forward to returning to work and seeing my co-workers.

It is done

Radiation treatments are done. My medical oncologist decided to cancel the CT scan originally scheduled for today as the lump on my neck has mostly disappeared.

I'm going to rest now.

Back on track

Yesterday, my radiation oncologist, seeing that my skin has healed nicely (aloe gel) in the one week away from radiation, said we could proceed with the last six rounds of radiation treatment. My medical oncologist, who I also visited yesterday, said it was also fine to receive my last round of carboplatin, which I received today. No more chemo! Thank you seems so little to say to the nurses at the infusion center, but before leaving today, I said a big thank you to all the nurses there. They have been awesome!

Last week, towards the end of the week, I developed another lump on the right side of my neck very close to the original site of the swollen lymph nodes. I talked to both my oncologists about it. The site is receiving radiation so there is not more we can do at this time other than to monitor it closely and see what the scans tell us after treatment is complete. I am trying not to worry and hoping that it is nothing more than inflammation from the radiation. My medical oncologist scheduled a neck CT scan for next Monday to take a closer look.

Four more treatments to go!

So close, yet so far

I have six radiation treatments left. This week will be my last full week of treatment. At least, that's what I thought going to the hospital today.

When I saw my radiation oncologist this morning, he did not like what he saw with the radiation burns on my neck. He wants to halt treatment for one week for me to recover (lots of aloe). I was a little reluctant being so close to the end of treatment, but he is the doctor and has been doing this for 37 years so I'm going to listen to his recommendation.

28 down, 11 to go

Just over two weeks left! Starting Wednesday of this week and through the rest of radiation treatment, I'm getting booster radiation treatments -- less volume, 7 IMRT fields instead of the previous 9 fields.

I lost 3 pounds this week, but considering I put on 10 pounds before radiation started, the nurses are happy, and I'm happy that I can continue to eat through my mouth instead of my feeding tube, although everything still taste like cardboard.

My nurses and radiation oncologist are pleasantly surprised that my radiation burns are minimal, primary on the front of my neck. I hope, through the next two weeks, it stays that way, and I can also continue to eat by mouth.

I am hoping my medical oncologist will allow me to remove my feeding tube right after the end of treatment and that she will allow me to return to work soon after that assuming my energy level returns to normal. I have heard for some, it takes a couple of weeks or more.

Monday and Tuesdays continue to be my hardest days of the week as I sleep most of the day and night. Fridays, due to the steroid pills they give me before chemo, I have the most energy, usually not falling asleep until 2 or 3 am. My blood count is still below normal due to the weekly chemo infusions. I wonder how long it takes for the counts to return to normal after the end of chemo.

It is always exciting to see all the people cheer at the hospital when patients are done with treatment. The sad part is seeing new people come in, knowing the fear they have because you have been there, and knowing the journey they have ahead.

23 down, 16 to go

Just over three weeks of radiation left and three more rounds of chemo. I'm so excited! I'm still able to eat through my mouth, which my nurses are pleasantly surprised.

I still have this fluid in my right middle ear, which makes it hard for me to hear, but my oncologist keeps telling me not to worry about it for now. This week, I've developed a mild ringing in the ear also. I hope that's also temporary. I'm fearful that some of my hearing might be gone at the end of all this. We will see or, as in this case, not hear. My jokes are so stupid! Haha!

13 down, 26 to go

13 IMRT radiation sessions down, 26 more to go. Yes! No new side effects to report. I've already mentioned how much not being able to taste things has changed my feeling about the whole eating process. I'm so jealous when I watch these TV shows on the travel channel and the food network, and these guys are eating everything. The food looks so good. Thank goodness there is no smell-a-vision feature on televisions yet. If so, my television would have my teeth marks or at least saliva all over it, the little bit of saliva that I have left.

Today's chemo infusion was the quickest on record for me. In and out in one hour! I met an older gentleman in the infusion center today. We spent almost the whole time talking about Macs since I noticed he was carrying an Apple bag. He mentioned he still uses an Apple laptop that's 8 years old. Dude seriously needs an upgrade. We had identical first generation iPhones. Cool.

I received my feedings for my feeding tube this week. They shipped me six cases of NUTREN® 2.0. These little cans pack 500 calories and are vanilla flavored, which doesn't really matter since through the tube or through my mouth, I cannot taste it. I have yet to try them since I'm still trying to eat everything through my mouth to keep those muscles working.

For my daily amifostine shots that I receive before my radiation treatments, I've asked the nurses to use a bigger needle and to use my thighs as the injection site; definitely less burning sensation than my arms and the larger needle makes the shot go much quicker.

Have a great weekend!

8 down, 31 to go

Two weeks of radiation done, 6 more weeks to go. I cannot wait.

This week, I have developed a stuffiness in my right ear, making it hard to hear. What did you say? Tilting my head from side-to-side seems to make fluid in my ear move around, alleviating the discomfort. I'll ask my radiation oncologist on Monday during our weekly meeting if this is something that I should be worried about or if it's just the tumor responding, hopefully shrinking and dying a slow death.

I've lost some of my saliva and my sense of taste for all things and everything salty. It sucks! Everything taste like, well, nothing! Did I mention it sucks? I can still taste some sweet and sour items, but that probably won't last for long. I've promised Bee and Vance when my taste is back after treatment, we are hitting all my favorite restaurants in town. I cannot wait. Did I say anything about how much this sucks? Sorry, chemo brain. That sucks too!

I've developed some granulation tissue around my feeding tube site. It looks nasty, is a bit bloody, but the GI doctor said it's pretty normal and not to worry too much. Wonderful and often stinky! Just one more thing to worry about. And I'm not even using the tube yet, although I've ordered the feedings, which should be here next week.

Before each radiation treatment, I get amifostine shots. Man, do those shots burn. And the shots are HUGE! The shot is given submucosally, and the injection site has to be different each day. I have been avoiding the stomach area given how much the shots burn, choosing my thighs and triceps instead. I really hope these shots work and save my saliva. I don't want dry mouth for the rest of my life.

My good friend and dentist Tommy was kind enough to make fluoride trays for my teeth, which I use for five to ten minutes each night. Hopefully my saliva returns (thank you amifostine) and I can avoid having to use the trays for the rest of my life. Looking for a great dentist in the Atlanta area, give Dr. Ma's office a call and tell them Mark sent you.

Happy new year!

False start

First, I'm very happy that my ulcer pain this time only lasted two days.

This morning, I visited the infusion center for 2 hours for my infusion of carboplatin, the first weekly round of seven total rounds that I will be receiving each Friday. The carboplatin is easier on the body than the cisplatin that I received in the previous three rounds of chemo. The dosage is also lower so I'll have to visit the infusion center each week, and I'll only receive one chemo drug as opposed to three chemo drugs each round.

This afternoon, we stopped by the hospital for what I thought was my first IMRT radiation treatment. Instead, the technicians only took a few more x-rays to confirm that the simulation scans align with the new x-rays once I'm strapped into the mask which they made last week. The mask setup is definitely tighter than I thought it would be now that the mask is dry and hard.

Since the hospital is closed on Christmas, radiation will start on Sunday. Prior to each treatment each day, I am required to arrive 45 minutes early to get my amifostine shots. The amifostine drug will hopefully reduce xerostomia, which is a very nasty side effect of radiation to the head and neck.

Happy holidays.

Note to self: Remove wallet (credit cards) from pocket before entering MRI machine!

Please go away

I think my ulcer is back. The pain!

I feel your pain

Ezra, I feel your pain.

Heads or tails

Am I glad this week is finally over. While I struggled with eating during the second round of chemo, the third round brought dry sinuses, lots of nose bleeds, and a few sleepless nights during which I attempted to sleep while in the sitting position.

Yesterday, my radiation oncologist looked at my nasopharynx using the endoscope. He said, compared the first time he looked at me, my nasopharynx has "flattened out and things look normal." Awesome!

After my doctor's appointment, the technician made my radiation mask, which I will wear each day during radiation, and CT images were taken, which is used to map the IMRT radiation treatments. I thought the mask would take longer than the five minutes required, which included taking the CT images, and the whole process was relatively painless even though I was strapped down during the process. Radiation treatments will start next Friday, will last eight weeks, and take approximately 15 - 20 minutes each weekday.

The mask turned out to be much larger than I thought it would be and looks similar to the picture below. They placed the tattoos on my mask instead of my neck, which happens for some patients. Wearing this thing, I feel like a mummy.

Round Three and Going Forward

Yesterday was the start of round three of chemo. Round three was delayed one week due to Thanksgiving holiday. Hope everyone had a great Thanksgiving.

So yesterday, I got a 3-hour infusion of Taxol, today a dosage of Cisplatin, and now I'm wearing the portable pump for the 5-FU, with the pump staying next to me for the next 5 days, the same as the first two rounds. I'm a bit excited since this will be the last time I'll have to wear the portable pump. I won't miss it one bit.

Going into IMRT radiation treatments (8 weeks, 39 sessions), which is tentatively scheduled to start on the week of Christmas, I'll only be getting one chemo drug, Carboplatin. Originally, I thought I would get only 3 rounds of Carboplatin spaced 3 weeks apart like the first 3 rounds of my induction chemo treatment, but instead, I'll be getting a lower dosage once a week. That means 8 weeks of radiation combined with 8 more rounds of chemo!

My oncologist wants to see how well my tumors have responded to the chemo so she scheduled a MRI for later this month. For IMRT, I'll go in next week to have a mask made for my head and neck, tattoos will be placed on my neck for aligning the lasers, and using all the data, the radiation oncologist and medical physicists will take one week to run simulations before I'll be the actual genuine pig.

I've read and heard the first two weeks of radiation may not be all that bad. But after that, things might be hell inside the throat especially. I found some inspiration from last week's Top Chef episode where the celeribity guest was diagnosed with tongue cancer. His treatment plan is very similar to mine. Check out this article (http://www.mensvogue.com/food/articles/2008/05/grantachatz?currentPage=1).

PEG tube and ulcer update

What does the PEG tube look like? I've been assimilated by the Borg.



Apologies for not providing an update on my ulcer. It took two weeks after the PEG tube surgery before the pain from the ulcer was gone. Thank goodness it did not take longer.

The whole time, I was quite puzzled as to why the ulcer pain started immediately after the surgery and lead me to think that the pain initially was from the surgery itself. Two days after the surgery, it finally occurred to me that the pain is from the ulcer. But if I had the ulcer before the surgery, why was there no ulcer pain prior to surgery?

On the day that the ulcer pain was nearly gone, I got a letter from my GI surgeon stating he had performed a biopsy on my ulcer to test for Helicobacter pylori, which is associated with 80% of all ulcers. Well, the results were negative, which is good, but the doctor failed to mention to me that he had done the biopsy during the day of my PEG tube surgery. I'm no doctor, but I'm guessing the biopsy may have contributed to the two weeks of pain and discomfort! I thought the doctor did a great job, but perhaps he could have mentioned those minor details to me on the day of surgery.

Round Two Completed

It has been five days now since my 5-FU pump was removed but only two days since I have really been able to eat without any discomfort from all the acid, gas, and nastiness in my digestive tract. The acid was enough to even make sleeping difficult. I'm glad that's now all over.

My AST level last week was back to normal at 16. The ALT level was still high at 78 but that's lower than the previous week. More blood tests tomorrow.

Elevation in liver enzymes

So last week, my potassium level was low but has returned to normal after taking the potassium pills prescribed by my oncologist. This week, my liver enzymes are high.

I'm not sure exactly what this means yet as I have not spoken with my oncologist about it. Does this mean the chemo is damaging my liver?

Epstein Barr Virus (EPV)

Although there is no scientific proof that the Epstein Barr Virus (EPV) contributes to nasopharyngeal carcinoma (NPC), studies have shown that there is a high probability that it plays a role in the development of NPC.

As part of my weekly blood tests, my oncologist ordered, starting this week, the EPV panel in addition to my regular blood work.

Below are the results. Ideally, we would like to see the concentration of EPV decrease throughout my treatment. Data from various studies have shown that a lower concentration of EPV may mean a lower risk of recurrence of the cancer after the cancer is in remission.

Preparing for Round Two

This past Thursday, I met my oncologist for my post-chemo evaluation. She said the elevated white blood count is due to the daily Neupogen shots that I have been receiving, starting the day after my 5-FU pump was removed. There was no need to be alarmed as the Neupogen was doing it's job, but I probably didn't need any of the shots for my first round of chemo. Normally, Neupogen is given starting with the second round of chemo. She adjusted my Neupogen schedule from 10 shots over 10 days to 7 shots over 7 days for the next chemo round.

My doctor prescribed potassium pills to help my potassium level, which had dropped to 3.2 MMOL/L; standard range is 3.6-5.0 MMOL/L. If my potassium level drops too low (hypokalemia), I can become very weak. Also, your muscles, especially your heart, need potassium to function properly.

I mentioned to my oncologist how much pain the ulcer has been. She recommended taking the Prilosec 20 mg twice a day for the rest of my treatment. There is a possiblity that the ulcer was present even before treatment, but the chemo drugs and all the other pills that I took made the ulcer much worse. She cleared me for my second round of chemo, which will start this Thursday.

Ulcer pain continues

Before this ulcer, I don't remember ever having an ulcer in my life, even eating spicy foods would not cause heartburn as it does for others. I'll never forget about this one. The pain continues. I'm taking daily pills of Prilosec as recommended by my GI surgeon at the hospital. It does seem to be better each day, but having the chemo drugs inside my body means it will probably take much longer for the ulcer to heal than normal.

Every Tuesday, I have blood work done. This morning, the nurse knew right away that I didn't drink enough water based on the color of my blood. The blood tests show my white blood count is through the roof.

Component	Your Value	Standard Range	Flag
WBC, AUTO	26.5	3.5-11.0 10*3 uL	AA

I think the elevated count might be from the ulcer and the daily Neupogen shots I am receiving and might explain my slight fever on Thursday night after my feeding tube surgery. I see my oncologist for a checkup on Thursday and will ask her about it.

Roller Coaster Ride

Wow, what a week! Just when things were getting better, I got no sleep Tuesday night when my whole body was just aching. I took some regular Tylenol, which did absolutely nothing for the pain. Wednesday, I took Tylenol 3 instead. Much better. Or maybe not as I would soon find out.

Thursday morning was my PEG tube surgery. I was told the surgery would be quick and only require 20 minutes. What I was not told until right before surgery was that they needed to hold me at the hospital for at least 4 hours after the surgery to monitor my recovery.

After surgery, my doctor informs me that he found an ulcer in my stomach during the PEG tube surgery. Take more pills, no big deal, right? Well, except for more pain in my stomach inside and outside, which I thought was from the surgery and normal during the recovery period, plus I was not allowed to eat for the remainder of the day, that pain turns out to be from the ulcer. I never knew an ulcer could hurt so much! And as much as I like Tylenol 3 for pain, I'll never forget to take it again without food.