Cancer

No More Port

Hello everyone,

Flurry was happy to cuddle when I got home from the hospital!

I don’t have much to write today, but I just wanted to share some more “good news”, and puppy pictures.

In the wee morning hours today, I had my medi-port removed!

It was a simple procedure. Though I was under anesthesia (they said maybe I wouldn’t even fall asleep!), I recovered nearly immediately after waking up. When the port went in, I had a heck of a time that day. After a long nap once arriving home, I was just a little sore in the operation area.

Too much work!

Post-radiation, I am doing well. My side-effects are mostly gone. I am still getting nauseous, and having tenderness in my throat. We’ll keep monitoring that for a few weeks. If it doesn’t get better, we may have to look into it further. My energy levels are increasing every day, my “sunburn” is healing, and my hair has yet to start growing back.

I’ll have another CT scan sometime in May, intermixed with some follow up visits. From there, it’s yearly scans and checkups. I’m basically done. I suppose there really is no “done” when it comes to things like this, but with today’s port removal, I feel freed from the shackles of cancer and treatment.

Off to the park!

Flurry is growing up, and learning fast! I took them to a park so we could do some “running” together. Well, embarrassingly, I’ve gained some weight since treatments started. I suppose I don’t mind that too much, but what really bothers me is the state my heart and lungs are in. I knew going into this that these would be affected adversely. I’ve said before that a flight of stairs is pretty difficult. Well, running with two goofy dogs isn’t much better. So, slowly, but surely, I will be getting back into “shape”, but also back into “health”. I can’t waste this new lease on life. I have to come back stronger than ever!

Yay park!

Finally, I want to express, generally, my sincerest gratitude to all of you for listening to, reading, and supporting me throughout this journey. Most recently, the parish were I am primarily a musician has been doing a fundraiser for me to defray medical costs. I’ve been working there since 2017, and I can’t say I know everyone there. Even so, the kindness and generosity of even complete strangers has been so heartwarming. I will write more about this in the future, but for now, I just wanted to again say “thank you”.

“Talk to you soon!”

Close Chapter – Open the Next!

Hello everyone!

As of this past Friday, I have completed my radiation regiment! Yahoo! This means that now, my cancer treatment is complete. There are still some things to go – port removal, another PET scan, follow-ups, etc etc etc. Besides recovering from surgery, the worst is behind me now. Hallelujah!

The proton center gave me this medal after my last treatment. They call it a “challenge coin”, like that which you may find among members of military units. I guess I am the 5495th patient they’ve had there. Anyway, it is a nice token to remember all I’ve been through and those who have also dealt with worse or less. I got to ring one more bell, and tear up one more time. The nurses and staff were wonderful to me every step of the way. I always felt like I was in good hands. At the first treatment I was nervous, but by the end I was sleeping through the treatments.

What they were doing

I had been hoping to have this earlier, but I finally got these images this week, and wanted to share them. The first one shows where and how much the radiation was administered. As you can see, the yellow areas were the highest concentrations of radiation, getting smaller going outward. The outline of this corresponds almost exactly to the “sunburn” and hair loss on my chest. I made the image larger than I usually do for clarity.

The second image here gives an example of how they would “line me up” at each treatment. They would take x-rays every time, and compare them to the original x-ray. From there, they would make any needed adjustments to me or the motorized table I was on. If you look closely, you can see my medi-port. eek!

So I am glad that is behind me, in a way. I will still be dealing with the side-effects for another few weeks. Mainly, fatigue, the “sunburn”, and a very sore throat. It has been quite difficult and very painful to eat/swallow over the past week. It will continue to be that way for a while. The right combination of Acetaminophen and Naproxen seem to make the pain bearable for now. My ears and head hurt too. Just overall unenjoyable. I’ve had a bit of nausea also in the past few days, and that old familiar rawness that goes deep in my throat. Soon it will all be a thing of the past.

The next chapter

Well call us crazy, but we decided to adopt another dog this week! Her name is Flurry!

She comes to us from the same shelter Bella came from. She has made herself right at home with no issues. Bella has been getting used to her, but I think she’s happy to have a playmate in the house now. Well, probably a bit annoyed, too, at this puppy who won’t stop nipping at her!

Anyway, that’s all I have to share for now. I’m not sure what’s next or when I’ll write again. Seems like I got a lot of work to catch up on, and a bit more work here at home! 😉

I can’t wait to get the port out and recover from everything else, and get back to normal activities. Physical activity will be very important for me, much more than it has been typically in my life. I’ve got to restore my heart and lungs to good condition – better than before all the treatments. I feel how much weaker I am now. It only takes a flight of stairs for me to be reminded how much work I have still ahead of me.

Thank you for reading. God Bless!

Radiation

Hello everyone,

3 years!

First of all, a happy 3rd anniversary to my lovely wife and I, on this auspicious TWOsday. 2-22-22! (It is 1-22 in the lunar calendar.)

Not a great day to celebrate with all the rain and cold, being so busy, treatment, and me not being able to eat much. But we will make it up on a sunnier day!

Radiation

It’s not comfortable. Or attractive.

Last week I finally started radiation treatments. So far, everything has gone quite smoothly. The process is very efficient; I probably spend more time driving back and forth than I do at the treatment center.

I mentioned I had to wear this mask that immobilizes my head. Well here’s a picture of me on the table ready to be zapped!

This machine isn’t the same machine as I had pictured before. The only difference is that this one only goes up 60 degrees on one side, instead of being able to go basically all directions like the other one can.

The machine is in its “rest” position. The middle part extends out to almost touch me when it’s active.

First they blast me on one side, then turn me around and blast me on the other. Before each time, they take some kind of x-rays to see that I am in the same alignment every time. They compare the x-rays to the initial CT scan I had done at my first appointment. Even things like the placement of my arms has to be the same each time.

Each blast takes maybe 2 or 3 minutes. It takes more time to get set up and adjusted. Total I am there probably 45 minutes from getting called back to leaving.

“Waffle Head” from the mask.

Completely painless, besides being uncomfortable on that metal tray and having my head strapped down.

Side Effects

Cute!

I started to feel some side-effects this past weekend. I took off Saturday from work preemptively, just in case I wouldn’t be able to sing. Sunday went ok, but I started to struggle towards the end. My throat (esophagus) is definitely becoming irritated and inflamed. I have the same tightness feeling that I did before I started chemo. It isn’t necessarily hard to sing, but it gets uncomfortable, and I start to produce a lot of phlegm. Now I am having more trouble eating, which was also to be expected. I will eventually be on a mostly liquid or very soft diet in the coming days. Even bread is not so fun to swallow. Though I couldn’t resist having two mini-bundt cakes that I made today with the mini-bundt-maker that Luyang got me as a present for our anniversary!

No frosting – yet!

I also start to feel fatigued, as expected. Not too bad, but I am feeling the need to nap a lot again, whereas I was really not feeling the need to as much in the past few weeks. Well, last week was really busy, besides treatment, so I suppose the combination of getting back to normal life on top of treatment is starting to add up.

I’m supposed to expect some minor burning on my skin in the treatment area, however I have yet to really experience this. Perhaps it is slightly noticeable visually, but I certainly don’t feel burned. Not yet anyway!

Being More Healthy

Speaking of skin problems – in a previous post I mentioned some topics I was hoping to write about. For the past many years, I have always been getting some patches of eczema in various places. This year is the first year in quite some time that I have not had any traces of eczema whatsoever. Maybe it is some fundamental change in my body from chemo, but I attribute this to changing soap. Instead of using the cheap, corporate brand, I decided to try some handmade soaps. They are still scented, but don’t have all the filler chemicals in them. I didn’t buy them with the intention or knowledge that they may help my eczema, but low and behold they did!

I also changed deodorant. After using the same old aluminum-laced stuff I’ve been using for literally all my adult life, I also made the switch to aluminum-free, handmade stuff. Really no difference in “performance”, but I certainly feel better about myself. Not just physically, but mentally knowing that I am supporting small businesses and individuals instead of Big Body Wash.

Bella loves her teddy bear! Doesn’t even tear it up!

That was an easy switch. But what else can I do to improve my health going forward? What I eat! Well cutting down on refined sugar would be one – that’s going to be difficult! Easier for me right now is cutting down on oils. Generally I feel terrible anymore after eating greasy foods. During chemo I was very sensitive to greasy foods. That sensitivity hasn’t really gone away. I still get pretty nauseous.  While that stinks, it really is a good thing. I have instinctively avoided having too much greasy food.

Until next time. Thank you for reading!

The Next Step – Radiation

Hello everyone,

“Xin Nian Kuai Le!”

Happy solar and lunar new year to you all! I hope you are all having a good new year thus far. Well, as good as it can be these days…

It’s been a while since I last wrote! Well, there hasn’t been too much happening in regards to cancer treatments. Please be patient with my stream of consciousness.

Bella got some new shoes for winter. What a dork!

My 3rd PET scan in early January came back clean! A “complete response to therapy”.

Unfortunately, I have been advised to proceed with radiation therapy. I was hoping not to have to do radiation, but the radiation oncologist believes it will be best for me.

I’m sort of “borderline” in needing the therapy. As my original diagnosis was “Stage 2-B”, or “Stage-2 Unfavorable”, the decision could have gone either way as to pursuing radiation. Because it was “unfavorable” due to the size of the mass in my chest, and the fact that I experienced several “B” symptoms, such as the night sweats, the doc wished for me to do radiation.

An example of the proton machine.
(I’m sorry Dave!)

The therapy I will be undergoing is a specialized type of radiation called “proton” therapy. I’m no scientist, but basically this therapy, instead of x-rays, uses charged particles – protons – to administer treatment. The benefits of this type of radiation are 1) it can precisely target areas for treatment and 2) there is little to no spillover into other areas not targeted for treatment. What this means for me is an increased mitigation of future complications. So, hopefully down the road my chances of the cancer coming back, or a different cancer appearing as a result of the treatments themselves, is lowered. Some videos are available here about the treatments.

My treatments should be starting in the next two weeks or so.

The mask is something like this.

I’ve already had my “calibration” appointment. They do their own CT scan, but not before making a custom helmet to immobilize my head, and giving me four very tiny tattoos to aid in lining me up to the lasers exactly each treatment. As this kind of therapy is very precise, I must be lined up the same each time.

I will have 15 treatments. Monday-Friday for 3 weeks. After that – it should be time to have my mediport removed. That will mark the end of this whole ordeal! I cannot wait! I don’t even notice the mediport much these days, except when lifting things or when someone or something runs into it. I’ll be happy to be back to “normal”.

My hair is also growing back well, but slowly. My beard is coming back nicely, although different! It seems to grow more “straight” and is also darker. There doesn’t seem to be much red in it anymore. How strange! My head hair doesn’t seem to be much different.

An organ pipe, refurbished and upgraded, for a current project – a big boy!

I realize as I’m writing this that I’m writing a little differently. Now that I’m feeling somewhat human again, I’ve been trying to catch up on the oh-so-many things I’m behind on. An insurmountable task in normal times. So, my brain is a bit scattered and tattered these days. Luyang reminds me often that life was put on hold for 4 months, and still will be for a little longer.

As cabin fever sets in, I’m itching to get out and do things. I happily shovel snow. It’s good exercise! I’ve been doing just a tiny bit of piano and organ work. I will resume my normal load of this after radiation is done. I’ve played for 15 or more Masses in the past 2 weeks. Quite a bit of singing, but these proton treatments aren’t going to pay for themselves!

What would a post be without a Bella picture?

Finally, something goofy. Some co-workers at church insisted that I shouldn’t be taking naps on the pews at church, and opted to buy me a couch for my office. How kind and thoughtful of them! I still don’t have my normal energy levels back, so after a long car ride and two Masses, I’m usually pooped. My naps are now more comfortable. And, Bella approves!

I’m looking forward to 2022. Next time I write, I will share some things I’ve been interested in and have been working on, as well as how I’m viewing life going forward.

Many thanks for the continued prayers and cards. The worst is over now. Thanks for reading!

Round 8 – and DONE!

Hi everyone!

Wishing you all a Merry Christmas and a Happy New Year! Thank you all for the well wishes and birthday wishes!

Just a short post to update on how things are going. Well…

Some of the nurse staff that have helped during my treatments.

I HAVE FINISHED CHEMO!

I, 4 days later, still feel like a pile of crap. Probably the biggest pile of crap I’ve felt since the first round. BUT I AM DONE. NO MORE!

I never want to go through that again.

Anyway, I suppose many of you have already seen my beautiful bride’s beautiful post with videos and pictures celebrating with the hospital nurses. I’ll post them here as well for those who may have not yet seen. See the bottom of this post for the video, and a bonus video!

Anyway, I’m more exhausted than I’ve ever been. I still had hiccups. Whatever. They will soon be distant memories!

What’s Next?

It’s been a particularly tiring week. Bella has been so patient with me. Lots and lots of extra cuddles!

Next week I have another PET scan, then a follow up consultation with the radiation department later in the week. Hoping for very clean results, and also hoping for NO radiation. I am more than ready to get back to LIVING!

At some point my port will have to come out – so another surgery. Not sure what other things will have to happen – certainly some other follow-up testing. One thing I do know, this year will be the year of health. Looking at how I will grow to be stronger, and healthier.

There is a lot I want to write about. Quite frankly I enjoy writing, and it helps me to solidify my opinions. I believe this has been a great outlet for me during this cancer treatment. I am going to do more writing in the new year, on not just my health, but my work and things dealing with it. More to come! First, I gotta shake this chemo brain!

It is hard to believe that this has been going on since July of this year. This has exhausted me physically and mentally. Without the steadfast love of my wife, the enormous and unending support from family, friends, and neighbors, a renewed personal faith, and lots and lots of cuddles from Bella, I don’t know how I would have made it through. I wouldn’t have. No way.

Thank you all for the love in 2021. I hope that in 2022, I will be able to give back some good to the world, in turn for some of what it has done for me.

Happy New Year!

Signing the Bell and giving it a ring!

Joy to the World at Christmas Mass!

Rounds 6 & 7 – Feeling Stuffed!

Hello everyone!

Happy Thanksgiving! Lots of food and a sleepy dog!

I hope you had a great Thanksgiving. It was nice for us to have a few extra days before the next treatment, so we were able to make our first solo Thanksgiving dinner. We had lots of food and everything turned out well!

Sorry that I didn’t write after treatment 6, so here I am making two posts in one after treatment 7. Only one more to go! You’ll hear from me again after Christmas.

Well not much new here with me, just the same old crap. So much for the medicine to help my hiccups! I had the worst hiccups yet after round 6, going on for three days. My throat is still feeling quite sore/strange. I made a bigger deal about this with my doctor, as I worry about any potential damage done to my throat/vocal cords. Probably nothing to worry about, but at least being so miserable from non-stop hiccups would be nice! So I got a different medication to try.

I even made an Apple Pie for the first time! Not too bad…

Well so far, the day after round 7, it doesn’t seem to help much. I’ve been in bed/couch most of the day, as laying down is the only surefire way to keep the hiccups at bay. I have been able to sing for Masses all Sundays of Advent so far, but it has been a stretch. My energy levels are overall very low. I even did a few tunings, which made me feel proud, but boy did they take every last ounce of power I had left.

I’ve said before that I have been feeling pretty tired. That more true this time than at the last post! It doesn’t take much to make me completely exhausted for the day. This won’t be a super long post just because I’m so tired and I find it hard to mentally focus for long periods. It feels a lot like one step forward, two steps back.

I have to push myself to not be a couch-potato, which I certainly have been. I’ve slept so much, and so well, lately, that I feel a lot less stressed. This is a welcome change, but paradoxically, I am still so tired. That’s ok – more cuddle time with Bella as the days get colder!

An uncomfortable change

Some friends visited and gave Bella a Santa hat. She wasn’t too thrilled about it!

Something else has happened, that hasn’t happened in over 10 years. I am now clean shaven! Most of my mustache and facial hair around my chin had simply fallen out, and the rest was looking like a high school boy trying to grow out what little peach fuzz he could. I decided, very solemnly, that it had to go. So, I cut my head hair down to a shorter length and went clean shaven. I HATE IT. My face is so cold now! But hopefully in a few months, it will all come back again.

My head hair is very thinned out now. Luyang affectionately calls me “Kiwi-head”, since it seems to her to look like the skin of a kiwi. Such love!

Next steps

One of the Nativity scenes at the Hospital has these villagers bringing some gifts. I’ve never seen such gifts depicted!

I learned at the latest doctor appointment that I will have yet another PET scan in early January, after I’ve finished Chemo treatments. (Do they have a buy 2, get one free discount on these things!?) After that, I will have a consultation with the radiation folks. I hope I don’t need to do it, as it will mean another month or more of treatments, 5 days a week, but we shall see. They won’t decide until they’ve seen the latest PET results.

Our real beeswax Advent candles from https://thebeeswaxyknees.com/

Anyway, one more chemo treatment to go! I can’t wait to be done.

Now it’s time for another nap…

Till next time – thank you for reading, and I hope you all have a Merry and Blessed Christmas!

Round 5 – With Some Good News!

To start off this post – good news!

#1 8/5/21 Lots of swollen lymph nodes!

My latest PET scan has shown that the cancer is essentially gone! As you can see comparing the two images, #2 is basically free and clear. More detailed images show some small signs of activity, but too small of detail to show on this particular image.

This is great news! After only 4 treatments, the cancer is almost gone!

Now, that being said, I still have four more (including “today’s”) treatments, for a total of 8. That is 4 less than the original plan of 12 treatments! Yahoo!

#2 – 11/5/21 Basically free and clear!

Why more treatments? As I understand it, chemo is effective on cancerous areas up until a certain microscopic level. So, the goal is to do as much chemo as possible to reach/surpass this threshold. Should there still be cancerous regions, tumors, whatever, leftover, those can be treated with radiation therapy. For me, that will be determined later. Let’s hope I don’t need to do radiation. There is a chance that I won’t need it. There also is a chance, given the original bulky size of the nodes in my chest, that I’ll have the pleasure.

So my treatment schedule now takes me to the last week of the year. Thankfully, my schedule will be modified to avoid Thanksgiving and Christmas. Yay!

Side-Effects

I was able to take Bella to the off-leash park for some daddy-dogger time. It felt great, though it took all my available energy.

Nothing too different on the side-effects. I certainly had the worst bout of hiccups this time around. They left me in quite a lot of pain. After asking “what else ya got” besides “drink more water” and “take gas-x”, I was told I should try again the first anti-nausea medicine I was taking, as it is known to help with hiccups. (Prochlorperazine) Remember, the stuff that made me so damn drowsy?

Well, come to think of it, I never had hiccups after the first round, and I only took that medicine after the first round. So, it appears that I have to choose between debilitating hiccups, or intense, sleep-all-day drowsiness. I think I know what I’m picking! I can take it in conjunction with my current anti-nausea medicine that seems to work decently, although far from perfect. I guess staying in bed is the quickest, yet most unfulfilling way to ride out the 5 or 6 days of yuck.

Now that we are “in the weeds” with treatments, I think my chief complaint, besides the persistent nausea, is the fact that everything is catching up to me. I am quite a bit more tired than at the beginning. Fatigue is definitely setting it. It means a lot more resting, but it also means trying harder to beat the fatigue. It’s ok to rest, and to take more time to do so when the body needs it, but fatigue can be a dangerous rut to get into. Especially now with the winter coming quickly.

I am used to the fatigue from the pre-chemo cancer symptoms. They say the best way to fight fatigue is to keep moving, keep doing. That is definitely true! Somedays it is easier than others. Somedays my mind says “Ya! We’re going to do all this stuff today!” But my body says “no, stay right here on the couch”.

My hair looks pretty sad these days. That’s all I have to say about that.

Complain much?

Parents enjoying their most authentic Hot-Pot yet!

I don’t want to have this blog sound like a lot of me bitching and moaning about my side effects, but at least to me personally, finding other folks’ blogs about their journeys through chemo, and the shit they had to put up with, definitely helped me prepare, and deal with things as they came. There are tons of resources out there from the government, hospitals, institutes and whatnot, and they are helpful inasmuch as serious informationals can be, but they don’t really tell the story about how it effects you the individual human. That you can only get from stories of others, and personally connecting with them if you can.

That’s why it’s been so nice to hear from so many people with their first-hand experiences, or their experience when their spouse went through chemo, and so on. I continue to receive wonderful, sweet cards, e-mails, and phone calls. I’m sorry if I don’t get back to you very quickly. I’m lucky if I remember I took my medicine. 

Holidays

“Thanks for spending more time with us, grandpawrents!”

With the holidays coming up, this will be the first Thanksgiving that Luyang and I will be away from the rest of the family. Normally Thanksgiving is the only major holiday that I get “off” and can spend with family. Well, it will be a bummer not being able to travel to be with everyone this year, but we will make the most of it here! My next treatment won’t be until after Thanksgiving! We have already got a big old turkey for fryin’, Luyang got the stuffing (I don’t eat that), and we’ve still to decide on the sides. I’m definitely making pies! It will be just the 3 of us, and that’s ok! It will be the same for Christmas. And also, my last treatment will follow Christmas, so I’ll be able to enjoy the days of Christmas as much as possible.

Advent/Christmas is my favorite time of year, for sure, especially when it comes to my job as a church musician and instrument repairman. December is usually insanely busy. Well, for the 2nd year in a row, it will be quite calm. No choir at church until I’m done with Chemo, little to no tuning work until I’m healed, and I won’t be at church for each weekend of Advent. Makes me a little sad! But so it goes. At least I’ll get to celebrate Christmas in church, and not at the hospital! I’ll be sure to post some Christmas music as we get closer!

Happy Thanksgiving!

I recently got Luyang a new mug and some coffee as a small thanks (and fuel) for her unwavering support.
https://www.norabeancoffee.com

I hope you all have a blessed Thanksgiving! I know that this Thanksgiving will mean a lot more to me this year than any other year in the past. The world is in a bad place right now, and it looks like there are hard times ahead for many people. Perhaps a little more thankfulness and humility will help lessen the pain of what’s to come. With enough, maybe, we can avoid some of the problems so inherent to humanity.

This Thanksgiving, take some time to be thankful. For what, is up to you!

God bless!

Round 4 – The Return of the Hiccups!

Hello everyone,

Not much of an update for you all this time. The same old same old with round 4. Nausea, headaches, very tired (and perhaps more tired than usual this time, I’ve been doing A LOT of sleeping the past several days), taste changes, and the worst of it this time – the hiccups. I hiccuped all day long on Friday. I’m not kidding! They never stopped except for sleep. Now my throat feels the aftermath of it.

Luyang thinks my hiccups are hilarious. Just wait till I cast the hiccup spell on her!

Last time I wrote, I noted that I was doing pretty good. Well, I think I jinxed myself. The next day (I think would have been a Sunday), the nausea hit me really hard.

There are several types of nausea. Notably, there are “anticipatory” and “delayed” nausea. With round 3, I definitely had “delayed” nausea, where it took more than 24 hours to set in. With round 4, I definitely experienced “anticipatory” nausea. I was already feeling quite nauseous the morning of treatment, and especially sitting in the hospital waiting for the drugs. Just the smells of the hospital, just the thought of having to feel like crap again, triggers the nausea. Awful!

Speaking of smells, Luyang thinks that she can smell the chemo drugs “on” me after I’ve had treatment. I know Bella sniffs me like “Where’ve you been?” once I get home from treatment. I’m sure my “scent” does change from these awful drugs. Something interesting to think about.

Well, some (hopefully) good news. I will get a PET scan later this week to check on how things are going. By some sort of miracle, if the cancer is all gone, I could be done with chemo. I have high hopes! But if we must continue with treatments for awhile more, so be it. I’ve been noticing my voice getting stronger again. I’ve been playing a lot of Masses lately as I’ve been able to, and singing is definitely getting easier. As painful as this process has been so far, I know it is working.

Once I have test results, I’ll write again. Good news or not!

I better go eat something and count my blessings!

Thanks for reading and may God and all the Saints bless you on this All Saints Day!

Round 3 – Feeling Pretty Good

Cuddle Time!

Round 3 was this past Thursday. SO FAR, I have been feeling the best out of all three rounds. The worst of my nausea was immediately after my treatment. I took my “new” anti-nausea medicine as soon as I got home, and honestly, besides being tired, felt pretty good. Overall, I have been quite tired this time. It might just be from the medicine, but I’ll take tired over nauseous any day. So, there has been lots of sleeping since Thursday. How nice it is to sleep!

Aside from being sleepy, I’ve had the craziest hiccups to date. Friday was non-stop hiccups. Today, Saturday, still some lingering, but seem to be going away (I HOPE). The only time I don’t hiccup is when I lay down to sleep. Maybe that’s why I sleep so much this time, so I don’t have to hiccup! (And so I don’t have to hear my dear wifey laugh at my every hiccup.) LOVE YOU DEAR!

strange tastes

Millet Soup

Again with this round my sense of taste got messed up again. I still don’t know how describe it. Again some people say it’s a metallic taste. I think it’s like when you burn your mouth on something hot, and how everything tastes and feels thereafter.

Besides all the “Western” medicine I’ve been getting, I always get my fair dosage of Eastern medicine, too. Yes, there is the typical 多喝热水 (duo he re shui – drink more hot water) prescription, but also lots of yummy soups. One soup Luyang makes for me is a millet soup (小米汤)(xiao mian tang – little grain soup) (I think). This is supposedly the go to Chinese remedy for upset stomach. I prefer to drink this out of a mug, I discovered, when I took it to church last weekend, and didn’t have a spoon!

Black Chicken Soup!

She also made a blackened chicken soup.
(乌骨鸡汤)(wu gu ji tang – silkie soup).
These chickens have dark skin but very white feathers. Again, I think my Chinese is accurate here. I’m doing this without help! It is said that this chicken has properties for upset tummies as well.

I didn’t mention in the last post, but I’ve been starting to lose my hair since just before my second treatment. It accelerated for some time after the 2nd treatment, but seems to have stopped. We’ll see if it picks up again. My hair is definitely thinner, and has also mostly stopped growing. I might need to shave my stubble once a week. Kind of strange! If my hair never completely falls out, I’ll be quite exited. However, regardless I will eventually go clean shaven just for Luyang, as she has been looking forward to see my face hairless for the first time ever.

Mmmm Crunch Dragon!

Speaking of my dear wifey, she made my treatment #3 an extra special TREATment. Instead of hospital food for lunch, she went and got my favorite sushi from our favorite sushi place, Nikko Sushi! ALL of the nurses were jealous!

 

 

Next steps

TREATment treats!

Going forward, after my 4th treatment, it seems we will have another PET scan to see how things are going. Should a miracle happen, and the cancer is all gone by then, I could be DONE with treatments. This is obviously the best case scenario, but one can hope! The standard regiment is 12 treatments. The nodes in my neck, which were quite large and obvious, are essentially gone. I can barely feel them anymore. I no longer have breathing and coughing troubles like I used to. All other symptoms of the Lymphoma are gone (night sweats, chills, aches, loss of appetite, etc). How wonderful to feel that this terrible treatment is working!

I hope that I could be done with treatments before Christmas. What a gift that would be!

Who drew who?

We also started to fill out this goofy sort of coloring/story book that we got from Mom and Dad. A fun way to kill time at the hospital! As you can see, we are very artistic.

That’s all for now. Hopefully the nausea stays away and I can feel more normal more often.

Continued thanks and gratitude for all the prayers, well-wishes, and help from so many of you. We are forever blessed!

Getting Used to Things – Round 2!

Grrrr

Hello everyone!

Sorry that it has been awhile since I last wrote, so this one will be a little longer!

See that picture of Bella to the right? That’s kind of been my face lately.

My treatments are a little off schedule. I only had the second round of chemo last Thursday. My counts were too low the week before for treatment. However, the oncologist has decided that going forward, even if my counts are low, that we will proceed with treatment, as keeping to the schedule is important, despite any increased risks in infection.

Sounds good to me! The sooner this is all done, the happier I will be!

Helping dad install a new mailbox!

Something else I learned is that the oncologist’s office can do blood tests in about 5 minutes. The hospital tastes 1.5 hours or more. So last time, I was at the hospital for hours before they told me I wasn’t getting treatment. Frustrating to say the least. So, despite the additional expense, I have decided to do all my blood tests at the oncologist’s office the morning of treatment. It’s a small price to pay for spending less time in the uncomfortable hospital. I suspect this will reap dividends come winter!

On this 2nd round, I experienced the same intense nausea for 4-5 days, and still have lingering nausea. I’m now on my third medication for nausea. I guess we’re just going down the list of medications till we find something that works…I am used to my stomach being weak and upset on a regular basis, so this sort of pain is nothing new, but it’s certainly something I don’t care to have to deal with. I suppose until the chemo is long done and gone, my tummy is going to be upset to some degree. I’m writing this 11 days after my last treatment, and my stomach is still bothering me. Yesterday, it was probably the worst it had been since the days immediately following treatment. I’m learning to live with it, but sometimes it just gets the better of me. I get cranky and defeated.

Cleaning up the tree branches!

Thankfully, this time around, I have not had the headaches, fatigue, and mouth pains like I did the first round. Part of that may be because I was not also recovering from surgery at the same time. I attribute the lack of mouth pain to really being on top of oral hygiene. Brushing after every meal, baking soda rinse, and mouthwash. I understand that part of the problem with the mouth sores is that of a bacterial one, which is heightened by your body not being able to fight off the bad bacteria in the mouth as it normally would. So, keeping the mouth as alkaline as possible is the best fight against the sores.

Coming home from the p-a-r-k!

Speaking of surgery – my wounds are healing well, and most of the time I don’t even realize my port is there – until I bump into something – then I know!

One new symptom I had was that for about a day or two after treatment, everything tasted awful, and the same. I’ve read that some people describe it as a “metallic” taste. Whatever the taste, it was unpleasant.

I have, however, been eating better this time around, even through the nausea. The trick really is to eat little but eat often. My parents probably think that I am eating as much/often as Luyang does now! Before treatments began, I definitely wasn’t eating too much, as the symptoms of the cancer itself had really taken a toll on my appetite.

Helping fix the door!

Speaking of parents, my folks have been here for the past two weeks to help out with daily life. From bringing me home from the hospital, to grocery shopping, to making food and fixing things, it has been a wonderful blessing to have them here. It definitely took some burden off of us for awhile. Bella, I think,  was most excited of all!

We are very blessed to have such a loving and supportive family to help us get through this challenging time for us. We know not everyone is so fortunate!

My next treatment, Round 3, is coming up this Thursday. Hopefully the symptoms stay mild!

Until next time, thanks for reading, checking up on me, sending me cards, offering help, and all those wonderful things. God bless!