So. Anyone dealt with Hodgkins Lymphoma before?

RevRico said:

Marjorie Suddard said:

In reply to RevRico :

Agreed. Also looking for Charlotte's Web for a family member who is in Hospice. It's a weird, weird landscape on the legal side--and I say that as a Boomer who used to pay the "smoke one with the creepy guy selling while trying to keep his giant dog's nose out of my crotch" tax.

So I just had a flashback rereading this thread. My guy back towards the end of high school had a couple of pitbulls that were giant lap dogs. Go over, see the man, burn one, hang out with the dogs, leave. Well those little shiny happy person dogs would snake the bag out of my cargo pockets on my  way out the door. 

First time I thought maybe I missed my pocket and stuffed the bag in the couch by accident, but by the third time I figured out why they were always crawling around on our laps. I wound up carrying an empty bag that stuck out of my pocket on purpose just to trick them whenever I went over. 

That's hilarious. Do you think he trained them to do that??

Glad to see your treatment is going pretty well so far. :)

Margie

In reply to Marjorie Suddard :

Knowing Luke? He definitely trained them to do that.

Glad to hear the treatment is going pretty well.

Just want to vent a little and give some translations.

"Constipation is a pretty common side effect" you will E36 M3 2 golf balls a week and be happy

"Emotions run high" you will randomly cry for no berkeleying reason, and it will go away for no reason. Thinking about it or trying to talk about it will make it worse. And any random thing will set it off, song lyric, flash from a red light camera, store being out of whatever ingredient, not finding the thing you put in the fridge last night.

"Tastes will change quickly" you can eat the same thing every day like you have for years, it will now take on a variety of flavors despite changing nothing in preparation. Yes, this includes plain filtered water in a glass, plain white toast, and regular unsalted butter.

At least the hiccups are gone for now. 

Everybody is on egg shells. I berkeleying hate it. I'm making jokes about it too shiny happy person. Oh you have a cold? Then don't cough on me and we're fine. I've had one too since last Saturday, hasn't changed a thing. You're not gonna catch Hodgkins from me, it's ok. Maybe you accidentally make me sick, wife already beat you to it, my temperatures fine, we're good. I'm not living in a berkeleying bubble until August.

I'm climbing the berkeleying walls here because it's too cold and wet outside to do anything and the only stuff I really need to get done requires being outside. I'm sick of the streaming services, videogames are getting boring, and after 25 books since the first of the year I need a slight reading break. 

Huh, this is basically my spring fever rant.

Tractor need fixed, the grass needs mowed, the seeds need started, the garden needs tilled, the coop needs cleaned off. Can it stop raining for a few days already?

Between her being sick and all this stuff coming up I haven't even kissed my wife in a berkeleying month.

Can't even go pour a drink. Hell I can't even go out to dinner, because I see food, and I want food, and then I get like 3 bites in and I either don't like it or don't want it any more. 

I really wonder how much of this is just mental E36 M3 that's compounding. 

I need to find a hobby or something to focus on. But none of the usual things are working anymore. To early to go raid the cow fields. 

We are here to listen, whenever you need to vent.

In reply to RevRico :

I read your "rant" and nodded my head several times in agreement. Very few people will be comfortable with cancer and joking about won't ease their discomfort, so try not to do it. Just treat it matter-of-factly, talk about the treatment schedule etc. I was all over the place on food. Some days it was fine, others I couldn't stand the sight of it. Just eat what and when you can. If your immune system is weakened you, and everyone around you need to take some care. Piling other stuff on top of the treatments isn't pleasant, it just adds more to deal with. I tried my best to find something positive in every day , just to keep my spirits up and I know it's hard to do day after day, but try. I found that I could look around the hospital, or convalescent center and easily find some poor soul who I wouldn't want to trade places with.Take this one day at a time and things will turn out okay, it just takes time. And, I'll agree with Angry....we are all hear to listen.

When I was a kid I loved frosted mini wheats. Once you become a young adult you decide it's time to test the theory that hey I'm an adult I can do whatever I want. I decided to eat a whole box of frosted mini wheats in one sitting. Didn't have problems E36 M3ting for a couple of days. Would not recommend unless well you just wanna see what happens. 

In reply to RevRico :

How about joining in the model building contests?

Glad to hear treatment is under way.  You'll get there, man.

In reply to Stampie :

Whole wheat goodness on one side,

light frosting on the other.

thats what makes the crunchy wheat

nicely sweet.

nowhere in the jingle do they mention toilet domination. I really think they missed a key demographic.

In reply to Stampie :

Oh complaining alone magically did the trick. I haven't had a weekend this rough since I discovered Captain Morgan Tattoo. 

It might not be so bad if I hadn't been fighting off whatever Dana so graciously shared with me last weekend that is still killing my head. I've burned through 3 boxes of Kleenex with no end in sight. My nose and upper lip have been on fire for days.

-------

But here we are, 7 days give or take a few hours after the first treatment. Until Friday afternoon, I'd actually felt better than I have in months. As Friday wore on through the weekend, I just feel like I have a horrible nasty cheap booze hangover, with a very rough emotional mixer thrown on. Do not recommend.

I'm going to make it a point this week and leading on to try to eat better instead of just eating to eat. I didn't really know what to expect, and was just told to eat with a focus on calories and protein. Now that I have a better idea of what to expect I can plan a little better instead of just stuffing my face when I'm hungry.

Really if I could just reign in my emotions, my sinuses, or my stomach, I'd be a lot better off, but all three want to go three different directions at the same time and that's making it harder than it needs to be. 

Plus side, I guess, I hit 250.0 on the scale this AM. I haven't seen a number that low since June 2014. If I could stay here and put some muscle back on, I'd be really happy about it. 

As long as your sinuses and your stomach don't want to cross paths, you're in good shape. I've had that problem before, and that's why I can't drink Rumple Minze anymore. 

2 infusions down, 10 to go. 

My mental health was finally stabilizing, and now it's going up go through the ringer again. Talking to people, it's a pretty common side effect of the one steroid. Greeeat 

Wednesday I have a follow up with my oncologist and then a pain specialist. 

My bloodwork looks... Ok. I was worried about my white blood cells and related numbers, because they're ridiculously high. Like if I was healthy they would be cause for an extended hospital stay. Apparently, they're where the chemo people want them, so I guess that's a good thing. 

I have a script in to pickup later that should fight the hiccups, thankfully. Those were unbearable last time and I really wasn't looking forward to them again. 

Sorry if this isn't entirely appropriate, but I had this done too. Laser engravers are awesome. 

The auto focus thing died as we started trying to do this, and we were a little concerned about cutting cheap Chinese  glass, so it's not as deep as it could be. The arrow was originally there, we just added toxic and the logo. Because apparently everything that comes out of me is toxic for 3 days, and I used this one after the first treatment. So it's now relegated to post chemo days only, and will be retired after my treatments end.

My appetite is still good, kinda. I'm hungry a lot but nothing sounds or looks appetizing. No nausea yet though. My guts were finally getting figured out again before today's infusion. I may start a daily fiber supplement. Pain wise, my left side still aches, but nothing new. 

Back up to 255. 

Baclofen is awesome!! I still have some pretty rough heartburn, but I've hiccuped less than a dozen times today, for no more than a minute. Beats the ever living hell out of last cycles hours long hiccup fits.

No high, no dizziness, no light sensitivity, and no hiccups. And 90 pills so that should get me through most of the treatment since I should really only need to take them for 2 days a cycle.

This is from my pretreatment PETscan. Unless something drastic happens, I won't be getting another one until June, or depending on how my labs look, not until I finish treatment. 

so not all the glowy spots are cancer, but I circled the main spots. The spot on my left thigh is what finally triggered the investigation into everything. 2 infusions in and it is noticably smaller to the touch. Like I actually have to feel around for it, it's not just a solid lump. 

Oncologist seems happy about that so far. Apparently I'm doing well with side effects, I did get a fiber supplement prescribed though. OTC Sennekot is $30, prescription Sennekot is $0.49. same exact everything. 

There has been an increase in beard shedding since the second infusion. Mostly gray hairs, but, my beard is mostly grey these days.

Saw the pain place too. They realize I don't want opiates, so in 2 weeks he'll certify my medical marijuana card with the state so I can be less illegal. I still have a cheaper and better selection on the black market than in the state medical market, but I won't get fined if I get caught with it. If I can get through the states broken website to register, because you HAVE to register before you get certified because idiot PA lawmakers took the worst aspects of every other states medical programs and rolled them into their own. 

Otherwise he doesn't know what to do because I'm finally out of pain for the first time in months, and you can't treat pain that isn't there. So he'll certify my card, and if the pain comes back when chemo is over, make another appointment. 

I assumed I couldn't, but for those playing the home game or finding this thread in the future. "Minor surgical procedures" are ok, major and elective surgical procedures are not, because they have to suspend chemo for wound healing reasons. Minor procedures are considered non elective things that you don't go under general anesthesia for.  But, if the chemo does what it's supposed to, there should only be a month or two Wait between my last infusion and being able to get my sinuses fixed so I can breathe through my nose and get a proper sleep study. If I can talk my PCP and whatever other docs into it. 

Third infusion went fine Monday. My beard is really thinning out, and oddly so are my nose hairs. 

What's really throwing me off is even with the laxatives, my plumbing still shuts down for a few days from the treatment, but I don't gain weight? Been holding steady around 250+/-1.5lbs. don't know if that's good or bad. According to Dana, my calves are getting thinner? I'm wondering if it's fat/muscle loss or just getting more liquids out of my system.

Everyone else in the house is still sick. Somehow I'm relatively fine, just heartburn and constipation, so I'll take it. They can keep their month long chest colds. 

Had the follow-up with the pain doc Wednesday for my MMJ card certification. In 2-6 weeks I'll get my card and can start using the stores here. Much different process from Cali, much dumber process from Cali, still doesn't stop anyone that wants a card from getting one. I'm solely interested in RSO from the stores because ethanol is rather pricey to make my own with. I get better flower and concentrates elsewhere at much better prices. 

What's really odd is that I seem to be syncing to the teenagers cycle, despite you know, my not being a female and not having a cycle like that. I should say it's actually throwing hers off a bit, even with her on BC to regulate them better. Not really sure how that works, but I may ask my doctor's out of curiosity. 

In reply to RevRico :

Glad the treatment seems to be going well. What do you mean when you say you're syncing with her cycle?

In reply to OHSCrifle :

Most likely it is just her weird ass way of having sympathy pains. Big tough 16 year old independent girl can't admit when she's stressed about something, but it shows in other ways. 

Since she went on birth control last year you could set a clock to her cycle. Until about a month ago that is, with the end of the school year coming, all this stuff coming up with me, her sister being extra bitchy, that punctuality has been lost and seems to be bending to my chemo schedule. 

Although with everyone else in the house sick and staying generally isolated from each other, it's hard to say really. 

Glad to hear you're pain free, cancer is shrinking, and the chemo is working. As for the sinus issue, the waiting is warranted. When I was taking chemo , I also had open wounds from surgically removing necrotizing fasciitis infected flesh. The healing process was dreadfully slow with a greatly diminished white cell count, and just made the whole ordeal that much worse. Just wait and get it done later. 

Going this am for treatment number 4. That'll put us a third of the way there. 

I really have to feel around for the the lump in my thigh, so hopefully that means good things are happening. 

Got our first insurance claim yesterday. So far, insurance has paid out $301k, just for drugs. No testing, no admin bullE36 M3, just needs. So about $100k a trip, should be about $1.5 mil by the time it's over. Thank berkeley for insurance. 

My beard is about a third of what it was. I trimmed under my lower lip and the monk ring around my head on my own. The monk ring was still jamming my plug-in Wahl trimmers though. 

If you look real close you can see the scar from my port, but can't see it pushing up from underneath. I'm still not sure how they're planning to pull it out with lidocaine in the office when they drugged me pretty hard with fentanyl to put it in. But I'll worry about that when the time comes. 

Doubling my doses of sennokate this week because the week long dry spells really suck and get uncomfortable. 

Also, another side effect nobody mentioned. Sex is different now. Everything still works, thankfully, but it doesn't feel as good and isn't as um "productive". I really hope this fixes itself when treatments are over with. 

Side note: we've been evolving my physical therapy. Started with resistance bands, and I have clearance at least from my PT to start weight lifting. But we've been working through a lot of yoga style poses and stretching and worked our way up to planks to help stability. Planking sucks. Sideways planking REALLY sucks. 

And the old lady that does my weekly blood draws is a mean old bitch. I turn the charm on every time I go in, jokes, polite flirting, building a rapport, and without fail she jams the needle in and bruises me for weeks on end. I don't like her anymore. 

Glad to see that you're kicking ass, even if it doesn't always feel that you are, (it won't, but trust me, you are). Tai Chi and aquatic Tai chi were paranoid for my body and sanity, yoga is a close kin, I'll be the first to admit that yoga is more difficult and can be very challenging, especially for a practice that's supposed to help center one's self and promote relaxation. 

With regards to intimacy, I can't really weigh in as my round dance was when I was 14. But I have a few broad stroke theories. I feel that at least subconsciously our bodies no longer want to procreate to avoid passing along predisposition, but that we still crave the endorphins and dopamine in addition to wanting to be nurtured and validated. The underlying needs that drive our desire shift. 

I suggest this because my pallet with regards to food and beverage also shifted post treatment, nearly every time. Stuff that I enjoyed in my younger years I now think as too artificial and too haplessly thrown together without direction and lacking any nuance or self restraint. 

It's a journey, and it's an unsettling one. We crave control throughout our lives and we have a significant portion of control over our lives stripped from us. But in a weird way, I found two significant things occur. First I started to embrace and enjoy the simplistic and secondly, I learned that things can turn out okay even when I'm not in control, as long as I'm aware of where I am. 

I'm getting really sick of this E36 M3. It's not even the chemo or the cancer itself that's getting to me, it's that I finally get back to normal again and then I need to go for chemo and get all berkeleyed up again. 

Monday is the halfway point of treatment, infusion #6/end of cycle 3. Friday I'll have my mid cycle pet scan, then the following Friday I should get the results. 

But goddamn. Infusion Monday, no sleep, no functional plumbing until Friday or Saturday if I'm lucky, then I can't even trust a fart until the following Saturday. It's berkeleying exhausting up and down the steps to the bathroom all day every day. Finally get what passes for normal for me, and start this stuff over again. 

I guess I should be happy. I know first hand how much worse things could really be. The number on the scale is staying around 250, all my clothes are getting bigger, and everybody keeps telling me I look like I lost weight. I certainly feel like I have, but when you E36 M3 40+times a week every other week, you definitely feel that way. Although not seeing the number go down makes you wonder.

And no, that isn't an exaggeration, I've been keeping track because they warned me that not going could be a sign of treatment problems. So glad I bought a bidet when we bought the house, I can't imagine how horrible I'd be without one. Next on the list is a padded seat. 

I do like having a medical excuse to get out of doing things though. "can you help me move?" Nope too sick. "Lunch with the MIL next week?" Sorry, can't plan that far ahead. 

Also, PA medical weed sucks. I would have fired the growers if they worked for me. My boss would have fired me for growing garbage like that. My berkeleying customers would have returned it. I get it, a big part of it is the states fault, but goddamn, these are multi state corporations in charge of this bullE36 M3. They could hire at least one person that actually knows what they're doing that could churn out high volume, high quality weed and extracts instead of high volume, low quality, picture pretty but tasteless, scentless, relatively weak acting products. Good to know that the companies are just as clueless as all the "anxiety" patients keeping them in business. 

So there was a bit of a berkeley up with my midway PET scan. It was supposed to be 2 Fridays ago. The delivery driver locked his keys in his car and AAA couldn't get there in time. Turns out the pet scan stuff only has a half life of 110 minutes and there's only one or two places in the state that make it because cyclotrons are big and expensive. That pass to a rabbit hole of reading that I'll spare you all the details of. Now I understand why the test is $14k though. 

So wound up getting it done last Monday, no results by the time I had my appointment last Friday, but got the results last night. Lots of big words I didn't understand. 38 second call from the oncologist this morning said everything is looking great, still gotta finish my treatments though. 

Yesterday was infusion number 7, starting the second half. That was a mess because they were short handed. What usually takes 3 hours took 6, but went smooth otherwise. 

I'm starting to look like a bald amish teenager, but I still can't bring myself to shave it off, so I'll keep dealing with the patchy beard. 

Otherwise, things are pretty much what passes for normal these days. So I guess that's good. Just 5 more infusions/ 10 more weeks to go. 

I'm plotting to bring in pizza for the floor on my last treatment day, since I always seem to miss lunch due to the scheduling. That should go over well with nurses, healthcare workers love free food, in my experience.

Berkeley yeah! It got a bit dusty over here when I saw the Facebook post. I know that it sounds weird to hear, but I'm proud of you. And not for doing what you're supposed to be doing and persevering because that's the only option and way. But because you answered the bell. Nobody wants to get the word and to go through treatment and nobody has a positive outlook with regards to having to go through it, even though there's no other viable option. You've kicked ass and you've taken names, And you've done something that you really didn't want to do and you weren't looking forward to it all, with just valid obvious reason. And you've done it. It's often ugly. It's never graceful and though it sucks you've had to endure it, I'm happy as berkeley that you have man. 

Glad to hear things are looking good! 

In reply to Captdownshift (Forum Supporter) :

I was really expecting things to be a lot worse overall. I'm still not feeling optimistic, but things are getting more normal. The pregnancy like emotions have been gone for a while, the number on the scale is staying about the same, my plumbing is even working again the week of treatment which is blowing my mind. The only really negative side effect has been sleep deprivation. And for that, they want to put me on sleep assisting anti depressants, and that is a hard no from me after my last trip down anti depressant lane. And a general lack of energy, I just get worn out easier doing yard work and projects. Going to PT every Friday I start with a mile on the treadmill, then 40 minutes of stretches and exercises and I'm fine with that. 

I haven't gotten into my Compazine (heavy duty anti nausea) script at all in the last 14 weeks. While I may not know or like what I want to eat, I still have an appetite, although the weed probably helps there. 

Even watching the Hodgkins group on Facebook, I seem to be doing better than most people, but I also dgaf about losing my hair, and that seems to be most people's big deal. So I'll take it for sure 

Still wouldn't recommend this to anyone, but it really hasn't been as bad as I was expecting it to be. I understand different cancers, different drugs, different effects, but there hasn't been any wasting away like I've seen with friends parents with breast cancer or prostate cancer, which I was expecting. 

I do have to start paying more attention to my glucose level though. I tend to fast 12-14 hours before my labs get drawn, and my glucose level is creeping up. They won't do a treatment if I'm over 125, last Friday I came in at 119. I've been averaging 107 though, unless I eat in the morning then it's in the 90s, so I may just need to start eating breakfast on Fridays. I get labs every Friday, to see how things are going and make sure I'm healthy enough for the Monday infusion. Since losing the neulasta, my WBC counts have normalized. Low end of normal, but still normal. I suspect that will come back towards the end if the trend continues.

My overall biggest complaint is our old welfare caseworker who didn't do her job. I could have had state insurance since we got married in August of 21, and saved $4100 we didn't have to spend at the beginning of this year. Knowing she was finally fired helps, but I'd be lying if I said I didn't want to punch her in the face for costing us that much money.