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 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!
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!
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.
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!
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!
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!
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!
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.
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.
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.
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!
Well it was certainly rough for about 5 days after chemo, but about Tuesday and Wednesday I started to feel much better. I finally had an appetite and ate pretty much normally. My bloodwork came back very good this week, so my job is just to recoup as much as possible before the next round knocks me down again! It felt good to be well enough to get back to playing at Mass, and doing a little more around the house.
And so the cycle will be for the next several months. Hilly terrain ahead!
I’ll have slightly different medications for round 2. I hope they help lessen the side effects a bit better, but now I know what to expect, and hopefully can handle things better.
Next time I will write more. Till then – Thanks for reading!
My new life has hit me like a load of bricks this weekend. At the time of my last post on Thursday, I felt fine. Later that night, the nausea began to set in. From there it was a terrible “first night”. Crazy nausea (that is perhaps only letting up a bit today – Sunday), going pee every hour or more, and general discomfort.
Friday brought…the hiccups! How strange. I’ve read it’s a reaction to the anti-nausea medication they give you pre-chemo. I’ve been told it’s from gas build-up due to constipation. Oh did I mention constipation? I’m used to pooping every morning as essentially a ritual. Not anymore!
I was given an additional anti-nausea medication, which, did zero for my nausea, and then made me all kinds of drowsy. I won’t be taking that again!
I did not eat much on Friday. Saturday I did much better, but still it wasn’t a lot of food. Hard to want to eat when you feel like barfing at any given moment. Today I feel like I’ve had the most to eat so far. In terms of the nausea, like I’ve said, I am feeling a bit better.
But not so fast!
Today, and a hint of it last night, my mouth starts to hurt. I mean everything inside my mouth that can hurt, hurts. My gums, my cheeks, my tongue, my teeth. My throat, too! It hurts to chew some simple soft shrimp. Some sores are visible, but a lot of this pain is essentially a phantom. Like little needles poking you all over, randomly.
Not to mention I’m tired as heck, my eyes hurt, and I’ve been an emotional train wreck.
Well, all of these things were to be expected. I suppose I can tolerate most of these things, but the nausea is honestly what kicks my butt the most. I don’t want to sound hyperbolic, but it really is close to debilitating.
I was proud of myself that yesterday I managed to do a few simple chores around the house with some energy to spare. It seems that energy will become a precious resource over the next several months. I hope that I and my doctors will find some better ways of managing the side effects, especially the nausea. I don’t want to rely on Big Pharma. Perhaps just sheer willpower will win the day!
Yes, this sounds all pessimistic and sad, but despite my situation, I have so many blessings. Who knew that having someone come by to walk Bella for an hour would mean so much? Or that a neighbor would make you a whole plate of 包子 (baozi – meat filled buns) at 8pm with sweet words of encouragement?
Bella has been such a sweet and gentle pupper for the past few days. I think she understands that something isn’t quite right with Daddy. She’s been extra cuddly (she usually is only affectionate on her terms) and extra protective. We see that her behavior has changed with her friends at the dog park. I suppose she is stressed, just like we are. Dogs are smart. There’s a reason for the name “man’s best friend”. Bella has helped us both through the turmoil of the past 1.5 years, we know she will get us through our latest challenge.
Lastly, but not least, Luyang deserves the gold. She has been working crazy long hours at work, which won’t settle down for several weeks. On top of that, going to the hospital with me, extra trips to the store, pharmacy, preparing meals, doing housework, taking care of me, rehearsals, lessons, playing with Bella, with little to no time to herself. She’s having a heck of a time too. I’m not always her best support, either, especially not lately. What did I do to deserve such a loving wife!?
Honey, I’m sorry we have to go through this at such a young age, and in this time of unbelievable social and global uncertainty. At the end of the day, we have each other, our pupper, and our family. We are truly blessed!
I hope the next time I write can bear better news. This week I look forward to returning to “the bench” and playing/singing for Mass. I hope I can do it. We’ll see how it goes!
Thank you all for the continued love, cards, prayers, and support.
P.s. – I am working on getting some kind of translation function set up so our family in China may be able to read these posts as well. So you may see some glitches here and there as I work on it.
Well it has been a very busy and tiring week. After a brief trip to visit family, I had one more day to do chores around the house before port placement surgery on Wednesday.
The port placement went very well. It actually hurts far less than the biopsy did. Just sore. My pain medicines did me no real favors, as I imagine some of you have experienced with them. I don’t like to take those things and I don’t think I really ever needed it. My surgeon is great, I know he did a great job.
Chemo Day 1
The first day of chemo today was a very long one – almost 9 hours at the hospital. Some delays in the initial bloodwork and tests ate up a few hours, but next time it should go quite smoothly and take much less time. Everything went very well, anyway. I didn’t even feel the needle going into the port! (Thank you lidocaine!) It was a big, long needle! The nurses were great, and it was a long day for them, too.
We managed not to be too bored! I even got to sleep a little bit. Looking forward to a good night of sleep, and hoping not to get up too much for potty breaks. (I’ve never peed so many times in one day in my entire life.) Glad we brought books, snacks, games, and coloring. Luyang always has great boredom-beating ideas.
Chemo will actually last for 20 weeks, taking me into early January. Hopefully all goes well!
I keep receiving wonderful cards with prayers and well-wishes. Thank you all so much!
I’m too tired to think about this anymore. Thank you all for reading!
First of all, I want to thank everyone for the numerous well-wishes, cards, and prayers. It has been overwhelming and heart-warming to read every single one of them! Please forgive me for not replying to everyone individually.
My port will be placed on September 8 and am scheduled to begin chemo treatments on September 9. Treatments should be every-other-week from there. My other preliminary tests have been completed, so other than waiting, I’m ready to go!
In the meantime, it’s a rush to get caught up on things at home, especially things I may not be able (or allowed!) to do for awhile.
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I’ll get right to the point – I have some unfortunate news to share. This summer I have been diagnosed with stage 2 Hodgkin Lymphoma (Nodular Sclerosing Hodgkin Lymphoma to be exact). But don’t worry! It’s very treatable, and likely curable. But it won’t be an easy journey.
Long story is – I have not been feeling well most of this year: different symptoms on and off, notably swollen lymph nodes, fatigue, and cough, among many others. In July I finally went to “get checked out”. From the initial blood test, lymphoma was suspected, and ultimately confirmed several weeks later with a PET scan and biopsy.
Sometime shortly after labor day, I will have a medi-port installed, and will begin chemo treatments. It will start with a regiment of 4 cycles of chemo (a period 8 treatments over 16 weeks). From there I will be re-evaluated to see if more chemo is required, and/or if radiation is needed.
I will be keeping a basic blog of my journey through treatments. Honestly I’m already tired of talking about it, and I haven’t even started treatment! This will be a way I can give updates en masse, and save me from broken-record syndrome. You can access this blog here: https://alexfries.com/cancer
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I have been looking forward to a somewhat normal fall, with church choir, Chinese choir, and community band restarting – Perhaps finally a somewhat normal life for this musician. Well I guess I’m going to have to wait awhile more. I will also be pausing lessons and outside piano/organ work.
I’m not excited about this situation, but I will do what I have to do. Once treatments start, I will, for Luyang’s sanity, take it easy and be very careful. I will, for my sanity, try to live as normal of a life as possible, even if that means staying at home mostly. Probably no holidays with family this year! Well, I think Bella will be happy to have me home all the time!
I don’t intend this blog to be a pity party for myself, but I know many of you will ask questions. So let me get in front of a few. I do not have insurance, but I am part of a Catholic healthshare “ministry” called “Solidarity Healthshare”. I fell into the “Family Glitch” of the illustrious ACA, and it was simply unaffordable for me at the time to have traditional insurance. Anyway, I have never had to “use it” (the healthshare), so, we’ll see how it all works out. It is similar to insurance, but I pay everything upfront, and am reimbursed according to eligibility later. Theoretically, this should work out just fine. If it does, you will hear its praises from me!
My primary care doctor is a little different, too. His practice is what is called “Direct Primary Care”. I basically pay a monthly membership fee to him, and I essentially have unlimited access to him. As many visits as I want, text/email/call whenever, etc. He’s also Catholic! If this sort of thing interests you, let me know and I can explain more.
So far, all doctors, my oncologist, biopsy surgeon, medical imaging, and hospital social workers have been wonderful. I am very pleased and blessed with how everything is going. My lack of insurance really hasn’t been a hindrance, just extra paperwork and a bit extra stress. It’s going to be tough going forward, I know. Even with insurance, these treatments are very expensive. However I have been assured by many along the way that the hospital will work with us, and not fight with us. Deo Gratias!
Some good news to share is that Luyang and I are finally homeowners, having bought the house we’ve called home for years now. (We’ve been renting.)
So for the cliches. Life comes at you fast! Don’t take for granted tomorrow. Give thanks to God for your blessings. I know this sucks a bit for me, but I also know how blessed I am.
Please don’t worry, but please keep me, Luyang, Bella, and the rest of our family in your prayers.
Once I begin my treatments, I will write again. Thank you! Love you all!