April 26 Chemo Day +5

 The last two weeks were miserable, the immuno therapy drug killed my appetite. I didn't lose as much weight but still lost some.  Still having issues eating, if I am tired can't keep anything down. Still have to force myself to eat most days.  They adjusted my drugs again, so I am eating a little better but not much.  So it is improving, hopefully it will get even better as time progresses til my next treatment, maybe I won't lose as much weight.  Other than that, having the usual side effects, cold sensitivity, tired, and that is about it for now. Still getting rest so that is good.  Dr. is please with my progress, so still winning.

April 12/13 Chemo Day and Chemo date +1

 The last two weeks were miserable, the immuno therapy drug killed my appetite drastically to the point I lost 9 lbs.  Had to force myself to actually eat.  So they adjusted my drugs (added a steroid to my Chemo) so now instead of finishing about 1:30, I finished about 3.  But now I am able to eat at least 2 meals a day.  So it is improving, hopefully it will get even better as time progresses til my next treatment.  Other than that, having the usual side effects, cold sensitivity, tired, and that is about it for now. But at least I am eating 2 small meals a day, hopefully that will increase as time goes on.  Tomorrow, I get "my little friend" (my chemo pump) removed.  Usually after that I am able to get more rest and eat more,  hopefully the trend will continue.  

Until next time, WINNING.

March 29 - Chemo Day

 Well went in today for Chemo, after the bloodwork my platelets were at 100,000, although last week when I told him I had a donor, he started laughing because I wasn't that bad yet (and he might not have started laughing if I hadn't led in with "I got a guy...").  Yes according to norm it was still low, but not enough to cancel the session, so after my Appointment they lit me up.  And like always I tolerate it at a level that amazes the staff, but the results are making them happy, Tumor shrinking, all organs clear, and I gained weight which means my body is absorbing nutrients.  Added an new drug, an immunotherapy drug, which is designed to target cancers with a certain protein signature, which my cancer happens to have, it will also boost my immune system, but we definitely have to watch for side effects as some can be severe.  But if my body handles like is has handled everything else then I am not the least bit worried.  Have said this before but will say it again,  going to win this battle.  Plain and simple.  Don't need or want sympathy, because we all know where it lies in the dictionary, between shit and syphilis, an appropriate place for it.

So one of my Infusion Angels (my name for the nurses there), gave me my drugs and explained every step to Kevin so now he knows what is happening and is not as upset by this all.  Not going to name the nurse because when I go there it doesn't matter which nurse I get, the all make you feel comfortable and able to beat this.  The care and comfort they provide makes it easier to deal with, you are overwhelmed at first but they get you through it, and eventually it becomes routine, although Carolyn thinks we are one of the favorites because 1)  I am upbeat and very straight forward that I plan on winning and 2) Because they are so caring Carolyn sometimes makes them gifts for the nursing staff (so far, personalized masks and shirts) because I don't think a lot of the patients there no how hard their job is, they are dealing with cancer patients, some of which will lose the battle, so I have nothing but High Praise for these ladies.

Finally they hooked me up to a pump, which is something that always happens, Kevin now understands it all and is more comfortable with everything that's going on.  So I get that removed Wednesday, and then get the car repaired.  So busy week ahead.

So all in all, making progress and all is looking good.

Mar 22 Chemo Day

 Well, this week went differently than in the past.  After the blood work was done, my platelet count is down to 64000, and the Drs cutoff is 75000.  So he postponed my chemo for a week.  Later he called with what he terms is good news (it's just more news to me).  He is going to add an immunotherapy drug to my treatment, because 1)  It will boost my immune system and 2)  It attacks cancer with a specific protein signature, which my cancer has.  And for those of you who worry, this is not instead of chemo, it is in addition to the chemo.  So we are going even heavier on the attack.  I think the Doc is doing this because he has seen how well I am handling the Chemo, and that I am improving faster than he thought. On an even better note, I have gained some weight, so my body is absorbing the nutrients needed from my food. Good sign, now I just need to start exercising so I can keep it under control.  But back to Chemo next week.  We took Kevin with us so he could see what was going on to relieve some of the anxiety from this.  So we are going to try again next week.

On other fronts, against my will but in accordance with Dr's advice (3, my GP, my endocrinologist, and my Oncologist because the cancer and treatment compromised my immune system) Carolyn and I got the first shot of the Covid 19 vaccine.  Our second shot is April 20.  If you are in Illinois and are a patient of the HSHS group (St. Elizabeth's and assorted local Doctors.) then you can logon to their MyChart site and if you haven't done it yet, create an account, this will allow you to access your medical info from current and past visits.  There is also an spot where you can sign up for the Covid vaccine.  We signed up on Sat, and were able to schedule an appointment for today.  Could have had an appointment yesterday, but had to many appointments already.  Carolyn's arm is bothering her (an expected side affect) me on the other had, am fine now, but will probably feel like crap tomorrow and Thursday (just like when I got the flu shot).

Speaking of which, Carolyn's vertigo is getting better, she had her second physical therapy appointment (for vertigo?  But yes there is physical therapy for it) yesterday.  So she is much better.

So I am still winning, and look for further updates.

March 8 Chemo Day

 Mar 8, Chemo Day.  Went over CT Scan with a nurse practitioner who verified what we got out of the results from the portal, organs and lymph nodes are clear, and the tumor is shrinking.  So I am winning, as I said in the beginning, I was going to beat this, and I am going to win.  Appetite is not slacking off so I am eating good (6 months of a soup diet makes you kind of hungry).  Chemo went well, watched a couple of movies and took a nap (one of the first drugs is Benedryl).  Got my chemo, and then my pump for the next three days (Wednesday it comes off).  Went to Drakes for late lunch and ate about half (if you see the portion sizes you will understand why, Kevin only ate half his burger).  We had to talk the Manager to compliment the food and the service, they had no problem accommodating special needs due to the Chemo (like I have to avoid anything really cold for about a week and a half after chemo due to cold sensitivity). When I mentioned the cold thing the server was like, no problem and was happy to make sure I got what I needed and wanted.  When I told all this (and she really appreciated that we wanted to talk to her for good things), I mentioned how her server helped with my cold sensitivity issue with drinks and such (and you don't know how much I appreciate this because some places say your out of luck), and explained why I had it due to chemo, she did something I was neither looking for or expected.  She comped our entire meal, and even when I told her that, that was not necessary she insisted (and yes even though she comped the meal we gave the server a tip - probably a little bigger than normal but with the way we were treated it was worth it.).  

  So this has been a good day, Carolyn's vertigo is improving, my scans showed progress, side effects are bother me to much even though I am on max dosage in chemo (they are getting stronger and stronger side effects, but that is to be expected).  And to top it off, had a great lunch (with leftovers for dinner) and a very good restaurant who understands what good customer service is.  Oh and the Dr. loved my "Let the Shenanigans begin" T-Shirt and my "Kiss My Shamrock" face mask.....LOL.

  So all in all, I am winning and will continue to do so.

K

CT Scan

 At my last Chemo session, my Dr. scheduled me for a CT Scan, to, as he put it, see how much we have killed.  Had the scan today and got the results already (I love these medical portals), we had to spend some time deciphering the medical jargon, but the outcome was this, it hasn't metastasized, is not in the chest or any of the organs or colon/intestines, not in the lymph nodes, basically looks like it is mainly in the stomach.  And that tumor is shrinking, so the phrase is Winning.  Of course we are looking at more max chemo to kill it all.  The phrase I use when talking to the Doc, "Saturation Bombing"  or let's kill it all and let God sort it out. Carolyn has already come up with a new phrase for a chemo shirt for me (I actually came up with the phrase...LOL).  Cancer brought a fucking knife to a Gun Fight.😃

Latest Update on My Cancer Journey

 Let's see, since my last chemo treatment what has happened?  I am eating solid foods, and by solid foods I mean, Hearty Gumbo, Chicken soup, Cheese burger (without the bun for now), Spaghetti with noodles, chili with noodles, chili with hot dogs, beans and hotdogs, All types of eggs, with toast, and some with ham, Popeys chicken with mac and cheese and potatoes and gravy, Bandana's BBQ (brisket, chicken, Ribs), with mac and cheese, BBQ Baked Beans, coleslaw, and Homemade Lasagna.  People ask Carolyn if I have my appetite back, I never lost my appetite, I lost the ability to eat solid food.  And now I can Doc was happy too,  when I discussed my chemo I referred to "Saturation Bombing" (for those without military background that means total destruction of the enemy and their resources) the doctor agreed with with my attitude as far as treatment, because we already are seeing progress I have a new CT Scan Mar 4 to see what's going on.  I seems that things are progressing well, but how well remains to be seen.  But at least it seems like things are going the right direction.  And the warm weather helps with the cold sensitivity so hopefully we can keep it for a while.  And with being able to eat, my weight loss is slowing down, my strength is coming back and my energy levels are increasing, I still get tired but it is at the end of the day.  So it is looking better.

Day after Chemo

    So it's the next day after Chemo, hooked to a pump I have to wear until tomorrow.  Some of the side effects have gotten stronger. Like sensitivity to cold.  But the upside is I am able to eat more. Today had Chili with Cheese and cut up hotdogs (sort of a chili beenie weenie), and had some sliced cheddar and having Gumbo for dinner.  So I am able to eat more solid foods.  So it seems to be getting better, and since the Dr. has finally agreed that 1) I can handle the aggressive chemo, 2) I won't settle for anything less that full out attack on cancer.  He has finally figured out that warriors don't believe in anything less that full out attack. So now we are on the same page (the page I wanted from the beginning).  I will beat this no matter what the odds.  That's just how I am and how my family history shows.

  And I think that fact I am starting to be able to eat more solid foods shows something about being a warrior.  And for all the people praying for me, keep them coming.  I appreciate it.

Feb 8, Dinner after Chemo

      It's post dinner after having Chemo, the Chemo was full bore aggressive.  Minimal side effects so far, but was told to expect worse as it goes.  Bring it on Chemo.  But that is not why I am making this post.  Was told my platelet count was low (saw test results and not to low, just below norm) and should try to eat foods etc. to increase it.  Well, Red meat is good for that so we tried making Chili for dinner.  Had the equivalent of a full bowl of chili and noodles for dinner.  Went down easy and stayed down.  First thing closest to solid food I have had in months.  This is a glorious day.

K

Feb 8 Treatment

 Had my appointment and Chemo today.  Asked the doctor about the level of Chemo, found out that when he said at my last appointment when he said he was going to light my up, he was taking me to max dose.  So he is now on-board with aggressive treatment of the cancer/chemo battle.  Asked about side effects (or lack of) and the attitude I got was enjoy it while it lasts....LOL  So I am a lot happier with the Dr.'s treatment plan.  For the first time I feel the Dr. understands that I will fight and win.  I don't think he understood how much of a fighter I am.  Also he seems to love the fact that we are always asking questions about treatment, etc.  I get the feeling that a lot his patients don't ask a lot of questions and the fact that we do makes him happy.  He was very happy that I am eating more (no matter if it's soup or chips and pretzels, it's still food).  I have noticed that the side effects that I am having (like the cold sensitivity) are worse this time (which is to be expected). So he obviously is "Lighting me up" and as much as it is going to be rougher as time goes on, I am happy because this is the way to kill the cancer, in military combat terms it would be "Saturation Bombing"  (in other words, turn their territory into a F****** Parking lot.  I don't like to lose and in this I refuse to lose.  (The doc likes our attitude in this too)

Until next time

Kevin, Cancer Warrior

Jan 31, 2021

    It's been about a week since my last treatment. Side effects are a little more, not much, still manageable easily.  Had an episode last night, knew what was going on around me but mentally was somewhat disaccociated. Second time this has happened.  Carolyn and I talked about it this morning and realized that the last time it happened was about a week (the Sat after) chemo, and we think this could be the Chemo brain they talk about.  Going to talk to Dr. about it at next appointment.  Now that we have an idea what is going on it isn't as scary.

    I really need to thank my support system during all this. My sister and brother in law Tim and Terri, my sister Marita, and most importantly my son Kevin and my wife Carolyn.  There support is what gets me through.

    Especially Carolyn, her love and strength keeps me going. There are times when I am tired and scared (yes people, I do feel fear sometimes) he love and strength keeps me going. I know this is hard on her but she just keeps going and helps me. I don't know what I would do without her.  I do know I couldn't do this. I don't know how to express how much I love her and need her.  She is my heart and soul and without her I would be a shell of what I am and would no way be able to do this.  I love you Carolyn.  Always and Forever.

And now, BACK TO THE FIGHT.....

Second Chemo Treatment

Went to my second appointment for Chemo today.  Had some confusion at the last appointment, he told me we were going to take a non-aggressive Chemo approach, to basically improve my quality of life and nothing more.  Saw the surgeon the following week and told him, he was pissed, said if he didn't want to go aggressive then to call him and he would set me up with someone who does.  Message oncologist and told him I wanted to go aggressive on treatment, I fight, I don't quit.  It's my body and my life.  Get to and his attitude is completely changed.  Tells me that the reason we went non-aggressive was to see how I tolerated the Chemo and side affects (which were basically none, thank you military for pumping us so full of drugs for pain, immunizations and whatnot to give me a extremely high drug tolerance).  He also said that if we had gone full bore right off the bat at my current weight, it could land me in the hospital, but now that he knows how I tolerate the drugs he is going to (as he put it), "Light me up"

So todays treatment was the much stronger dosage and I can feel it.  Tired, some nausea, and other symptoms.  But very manageable.  It will get worse but we are going in the right direction.  Current weight according to the Dr. Scale, 309, so my weight is stable for the moment.  So I am feeling better about the way things are going.

 

For those following this, I am in FB jail and can only send to my story.  Recommend selecting the follow button on the blog main page.

Good Few Days for Food

 Haven't been able to eat much but soup and protein drinks.  But found I can eat soft boiled eggs, also figured out a routine that allows me to get sleep, so it has been a good week and am getting some strength back.  Not a lot but some.  And the best part is yesterday I was able to eat about 1/2 a bowl of chicken and sausage gumbo (chicken finely shredded and sausage cut up very very small), but was able to get some proteins and carbs in the system.  Today going to try chicken and rice.  Wish me luck. 

      In Facebook jail till Feb.   To make sure you get the updates hit the follow button on the main page.  I was a bad bad boy....LOL

      Several things since the last post, emailed my oncologist and told him my desire for more aggressive chemo.  Received response that we talk at my appointment on Monday. 

     Had follow up with surgeon, explained what was going on as far as my cancer was going.  Now feel better because Carolyn and I know what is going on. When I told him about what my oncologist said and was going less aggressive on the Chemo, he was upset.  Told me to call him is my oncologist does not go more aggressive because my best chance is aggressive chemo.  He told me he could set me up with and oncologist for a second opinion that would prefers more aggressive Chemo treatment.  (Since the surgeon is affiliated with Siteman Cancer Center I'm betting the oncologist is there - and if the oncologist fights me that is what I will do). 

    Going to fight this as hard as possible, best chance for winning.

Day after 1st Chemo

 Well, it's the day after my first chemo.  The side affects were basically nothing this time. Main thing I had was I was very tired and slept a lot.  Minor nausea this AM but that was all.  Have to talk to both doctors because there seems to be some confusion.  Surgeon told me that, yes there was more cancer but it was in the abdominal cavity.  The oncologist says it was outside the abdomen so surgery isn't an option.  And is going less aggressive chemo.  Have appointment with surgeon Monday so I am going to clear it up.  Also going to tell oncologist I want aggressive chemo even though surgery might not be an option.  Not going to give him an option on this.  I want the best possible chance of beating this no matter what.  Because beat it I will. 

It's Friday

 Well, it's Friday,  Oncologists office called Wednesday and said they were rescheduling my Chemo to Monday because the Doctor wants to see me first and is adjusting my treatment (probably because of what the Surgeon found).  Wish me luck, not looking forward to this.  Upside is Carolyn is off so she can go with me to Chemo.

   More on Monday after I enter into Chemo Hell.

My Cancer Journey has started

 Good Evening,

      It has been a while since I updated the blog.  You see, I lost the weight loss battle and went up to 414 lbs.  I was listed as morbidly obese, a term I hated.  But it was true.  Then about 6 months ago I started losing weight, not a lot at first but I was losing it.  But then I noticed other things, feeling bloated after eating very little, pain during and after eating, etc.  So I treated constipation, acid reflux etc.  Then I went to my GP and she treated me for stomach nerve neuropathy, no go, so I went to a GI specialist for colonoscopy and endoscopy.  Colon was clear, esophagus was clear, but they found a mass in my stomach, and the biopsy showed cancer. So it was off to the oncologist, the did a CT scan and PET scan and it showed that the cancer was limited to my stomach, finally some good news. Start scheduling Chemo, in the mean time off to see the surgeon, have a diagnostic laparoscopy done and chemo port implanted. Unfortunately, the surgery showed that the tumor has broken off in the stomach, it hasn't spread, yet.  But it could. BUT, according to the surgeon they have CURED people at this stage even though it is classified as Stage 4 (because it is broken off in the stomach). So now Thursday (two days from now) I start Chemo, my oncologist is attacking it aggressively so it will be chemo every 2 weeks.  I will be sick a lot, miserable a lot, but I will win. I have great support, my loving wife Carolyn, my sister Mary Rita, My Sister and brother in-law Tim and Terri.  They are giving me support but no pity or sympathy (two things I absolutely hate), because I am an asshole, a title I am proud of, because assholes don't put up with anybody's Bullshit. I am a warrior and I don't like to lose, so I don't. Besides that Terri and Carolyn have gotten it to Crikut and are making hats and shirts for me so I will be the best dressed guy at Chemo. Yes I still have my twisted sense of humor and love of the absurd.  On the up side, I realized there was a problem because of the sudden weight loss, and guess what, as of today that weight loss has been 99 lbs in 6 months.  Down side, that sudden weight loss has caused me to be extremely weak, tired all the time, and requiring people to do things for me that I would normally take care of. Some days I feel like a massive burden, but if I get in, then I will lose, and I don't like to lose. People wonder if I will get upset when they say the will pray for my, I welcome all prayers from any denomination or belief, Catholic praying for me, thank you, Jewish, go for it, Muslim, please pray, Wiccan, Thank You, etc.  I don't care who or what you believe, feel free to pray for me. Yes, this is a long post, it is the first of the blog. I will probably post after chemo and doctor visits etc., and any major events (like when I can eat solid foods again).  Do you know, it really sucks being on a liquid and soft food diet because you can't stomach solid foods (another reason for the weight loss, can't take in enough calories).

     So stay tuned for updates.  It's going to be a long journey, but lets take this together.

Kevin