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Showing posts from September, 2022

Now I've been happy lately. Thinking about the good things to come... September 30, 2022

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  Birthday done, on to Christmas!  Milestones... So things were just like I like them for my birthday.  No fan fair, just time with my family and I had lots of family time. I slept well last night (in comparison).  I had like two blocks of 3 hours which made me feel much better this morning.  My sugar is only 127 this morning so things are looking up this morning.  I didn't have as much pain when rolling over last night which is probably helping with the sleep.  Either way I'll take the little victories. I got a lot of the weed harvest yesterday.  There is still a ton, but I ran out of steam (I must have a 1 lb. of yield at least thus far. So Tiffany and I should be set for the winter and well into the growing season (if not farther). I get scared some days that my tiredness or lightheadedness is from a failing liver, but I have to remember that all my liver function blood tests were great so I have to stay focused on that - we are curing this liver damn it! Well, just about br

It's not time to make a change - September 29, 2022

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When I got my first actual diagnosis from an oncologist, he told me I would have 6 months to live without treatment.  That 6 months puts us right here (actually it was more in the middle of the month) at my birthday.  It is the first thing that hit my head when he said it, "I'm not going to see my next birthday" rushed right into the forefront. My birthday became a maker, a toll gate if you will, of my "I am beating this shit campaign".  So hear we are 6 months later.  12 rounds of chemo (13 now actually), major open chest surgery, and full rectal tumor removed.  I'd say I've won some battles, but I'm still at war.  Luckily, I am a stubborn SoB that does not roll over for shit (except Tiffany, but she has my number).  So we get to this milestone and we move to the next - Christmas, then Saint Patrick's Day - because damn it I'm celebrating.  I GOT THIS!    I had a good night of rest last night (for the first time since returning home from sur

It's a still-life water color... Of a now late afternoon - September 28, 2022

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 Well, it is almost my birthday.  A little more than 6 months after an official diagnosis of stage IV colorectal cancer.  I still remember when the oncologist said I had 6 months if I didn't get treatment.  And the local oncologist surgeon telling me to go get a couple Frosty's.  I mean why not just say, "you're gonna die dude, go get some ice cream if you want".  Well, fuck them!   I have gone from inoperable to primary resection (the colon tumor) and now I am treating the liver cancer directly.  I am by no means safely close to shore, but I can at least see a lighthouse now.  I need to be one of those lucky cases where all of this works. Surgery recovery has been harder than I expected.  I am used to my body bouncing back from these things, but I still a good amount of pain and not really as mobile as I would like.  I need to get walking more as I think I am retaining fluid in my midsection and that exercise will help.  Lord knows I don't want to take anymor

What a dream I had... Pressed in organdy - September 26, 2022

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 My birthday is rapidly approaching...  I made it.  It was a milestone for me when I was told I was sick.  This month marks the "6 months" I had to live without treatment.  Well, damn it, I am still alive and kicking!  And with all my strength, I plan to be here for the next one!  I made mistakes, my health, how I took care of my body.  I knew what to do, I just chose to do other things. I was just sitting here trying to think about what I thought about yesterday.  I can't remember.  I know I played some games, watched some bad streaming media, ate a lot of food (didn't gain any weight).  I spent a lot of the day stoned - kept me pretty mellow.  It did rain most of the day.  I almost pulled in a line from Kathy's Song on that rain comment. Today we are off to NJ to have my pump serviced, meet with my oncologist, and get some blood tests to see what the chemo did to my chemistry.  We are going to try to work this into a day trip in the future so that we don't h

The say that Richard Cory owns - One-half of this whole town - September 25, 22

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  I like pumpkin spice.  Now I am not going all Dune on the pumpkin spice, but let's face it, I like pumpkin, I like cinnamon, nutmeg, etc...  I like pumpkin spice coffee (see above component admiration) - Pumpkin spice cream and pumpkin spice coffee is tasty.  Since I like pumpkin spice and I like coffee with cream it is basically a Tasty=P + Co + Cr situation.  There... I have confessed and you all feel better for it ;) I posted that on Facebook as well - because I, at least, crack myself up.  And laughter is so important to us.  It just makes me feel better to laugh.  Truly find something funny beyond its implications.  It was like when Tiffany and I first laughed at the noises the ileostomy made.  Uncontrollable loud fart and squishing noises.  We laughed so hard because it was crazy ridiculous and we didn't see that coming.  However, for a long moment, the ileostomy wasn't a result of my extensive cancer surgery.  It was the instigator of some comic interlude that allo

This is my tune for the taking. Take it don't turn away - September 24, 2022

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It is freezing this morning, literally.  Not a hard freeze, but there are frost spots.  Luckily, I harvested some of the ganja plants (slightly early) to ensure some harvest.  Most need a little more time and luckily they didn't frost last night and they all (main branch and some shoots) are still healthy and happy this morning. I talk a lot about weed in the blog (not as much as I do Tiffany, but she is super hero and deserves the press).  I know that, though there shouldn't be, there is some controversy in places about marijuana use.  It makes me laugh.  This simple thing that I can grow in my nice little raised bed, side of the deck garden has made all the difference in my cancer journey.  I am going to bullet it to make my point. It makes me hungry and you have no idea how important that is When I'm nauseas it takes that right away It helps me focus on one thing It makes me mellow and less anxious (I'm hyper, need to do something all the time) It helps with my eveni

Blessed are the meth drinkers, pot sellers, illusion dwellers... September 23, 2022

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  I changed my sweatshirt!  I also have some thin beanies to keep my bald head warm as it is only 44 degrees this morning.  My head has been getting really cold when the temperature drips, let's face it, I have been getting cold.  The guy who used to sit around in a t-shirt and shorts all winter is freezing most of the time as we move into fall here. As I mentioned in the other message, the cancer waiting game is killing me (you can read them about the treatment, wait, test, evaluate, plan, repeat cycle).  Either way, you just feel like your are floating from 2 month date to 2 month date.   I did some harvesting yesterday (the weather kind of forced my hand), but got some decent bud out of it.  I had to harvest a couple of branches that go injured in some thunderstorms.  I quick dried some in the dehydrator and I have to say that the blueberry bud is pretty darn good high. I can honestly say that marijuana helps me through the day.  It keeps me mellow rather than anxious (I am stil

I hear the drizzle of the rain - September 22, 2022

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  I know I have the same sweatshirt on everyday, but if you look it is a different t-shirt :) I have been way too involved in the Trump sagas that are going on around me right now.  The constant news cycle with tiny bits of info distracts me from doing much else.  It plays into my current fog and hyper activity.   Beyond that we haven't done much (running around, groceries, etc...), but spending most of the time watching TV.  Understandable though due to the amount of time we spent in NYC unable to really do anything.   I think the waiting is what bothers us (Tiffany and I).  I know I have mentioned this before, but the cancer waiting game is the toughest part (though the giant surgery was pretty challenging). Not really in the mood to talk today so going to sign out. I love  you all!

The night sets softly - With the hush of falling leaves - September 21, 2022

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 You know, my birthday is soon.  I honestly had some fear when I was first diagnosed that I wouldn't make my birthday.  I was scared.  I am now in the I will make it to my next birthday mindset, and the next, etc...  I haven't been feeling the best.  The type 2 diabetes that came on with chemo has wreaked havoc with me and in the afternoon my head gets swimmy and I can't focus on anything (I generally take a nap).  I suppose my body could still be somewhat tired from the surgery.  Lord knows the incision line still stings a bit and is very sensitive. Tiffany continues to be awesome about taking care of me.  I got up and put the dogs out myself this morning.  I like to be able to let her sleep, I know she is as stressed as I am.  This first two months of chemo will be the indicator as how my liver reacts and we both know that it is critical things shrink or disappear.  If it doesn't, well let's not talk about that yet. I am pretty sure this hepatic pump FUDR treatmen

I'd rather be a spider than a snail... September 20, 2022

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  Well I feel a bit better this morning.  The type 2 diabetes that came on with chemo really messes with me.  I have to try and keep on weight, but also control my carb intake.  It is menacing... :)  I suppose there are worst things I could be dealing with. All in all, I have lost a lot of weight due to the surgery.  Somewhere in the range of 17 more pounds.  So overall since I was told I had cancer, I have lost about 30 lbs.  I don't think I was fat before (I was obese by the chart, but I have always had a big frame for a smaller man). Tiffany continues to amaze me on a daily basis.  She really is taking care of everything and I have no idea how I will ever repay her for taking care of me.  I feel a little guilty as I am not a helpless man and never have been.  I have always been one to help with home cleaning, yard upkeep, and everything else.  I have always felt that it is my place to be able to do any of the chores in the house. From a cancer perspective I'm scared.  The Sl

Slow down, you move to fast, you got to make the morning last... September 19, 2022

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  Sorry I haven't posted in a while.  I am back in the comfort of my own home (as messy as it is) and was just too tired to get on the computer long enough to post this.  It is amazing how much that surgery has messed with my energy levels. I have been struggling with the ostomy bag since surgery, but this is the first 3 day sequence when I don't have a ton of burning pain when I move.  The belt (that hooks to the bag and pulls it to my body) has seemed to help a lot and the ostomy nurses should have just told me to wear it 100% of the time.  Tiffany and I aren't real good at changing it, but we seem to have done it well this time (it was a struggle). The pain in my surgery areas is still sensitive, but I have such a high tolerance for pain that I can't really tell you whether at 3 weeks this is how you should feel.  There are little spikes of localized pain along the incision (the feel like they are inside which makes sense), but other than that I doing well.   I'd

I am sitting in a railway station got a ticket for my destination... September 15, 2022

watch No picture today as I don't feel like it.  It would look like yesterday's picture all the same.   I get to go home today!!!  I can't wait for Tiffany and I to be in our own home with our daughter and pets. I have had enough of living out of a hotel suite and want to be in the comfort of my country home.   Tiffany has been amazing and I wouldn't have made it through this week in NYC without her.  We talked about her going home to help Maeve, but I wouldn't have faired well alone.  I am getting better at moving around, but still not anywhere near being able to fend for myself. I haven't written much about the news of my tumor riddled liver, but I will.  I am trying not to depress myself too much, but I take some joy in the fact that the surgeon feels we got all of the colon and surrounding lymph node tumors out (this helps with further body spread). So I need to get around and ready to split for home. I love you all!

Start spreading the news...September 14, 2022

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 So today is the last full day in NYC.  As much as I like the city, I would much prefer to recover from this surgery in the comfort of my home.  I miss my puppies, kitties, and my recliner.  Oh, and how I miss my bed! All in all, it wasn't that bad considering the cut I have from sternum to crotch.  I got the staples out yesterday and that is helping with movement and my mental image of myself.  I looked a bit like Frankenstein with all those staples.  Staple removal was all part of my follow up appointment at Sloan.  Unfortunately, my oncologist wasn't real positive about the HAI pump and responses.  He didn't say anything negative, but also didn't put forward a positive attitude.  With that said, I am going to remain positive that the new direct chemo to the liver will continue to pound away at those tumors and I will be able to have the liver surgery they couldn't do this time.  I just have to keep myself healthy and hope the good cells are stronger than the canc

You have angels that dance around your shoulders - September 13, 2022

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  September 13th...  It is only 16 days, a couple of weeks until my 55th birthday.  Honestly, upon diagnosis, this was one of my milestones.  Get to my birthday, get to see the new Lord of the Rings series on Amazon (it really was).  I was so afraid reading about the diagnosis possibilities.  However, here I am, major surgery under my belt, colon tumor removed (fingers crossed - should find out today) and though my ability to get out and about has been affected by this and all the covid issues, I still have my family and I am able to spend everyday with my wonderful wife and children (and all those stinker butt pets). Last night when putting me back to bed, Tiffany was very affectionate.  She is not always a touchy/feely woman and I appreciated that as she is strong.  However, she must knew that I needed that.  I appreciated her touch and hugs.  It comforts me and reminds me what I am fighting for. We walked 2 or so miles in NYC yesterday down towards the UN,.  It was nice.  Better was

Counting down the days!

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 Both Tiffany and I are ready to come home.  As much as being together makes anywhere home, we both long to be in the comfort of our home.  Unfortunately, we are right back in the city on the 23rd to get the staples out of my large incision and follow up with the primary surgeon.  Maybe, I'll get a date for the ileostomy reversal surgery (so much surgery). Things are going well with recovery, I get a few new pains every day as things heal and wake up, but I also feel stronger everyday and become able to do more and more for myself (not that I am full of stubborn pride and hate being incapable ;) ). Tomorrow we have a meeting with the oncologist Dr. Leonard Saltz.  He is quite well known and a pioneer in the field so we are good hands.  We need to know what the next steps for the liver are.  I suspect it is a chemo and wait plan as they have to eliminate the small multiple tumors in the liver before they can address the larger ones.  Luckily, the direct liver chemo isn't as side

It's a little bit funny - September 11, 2022

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  Well it is only 3 more days until we leave for home.  As much as I like being in the city, it is time to get back to my country house.  Tiffany brought up missing the sound of our wind chimes from out back and I agree, it is representative of how quiet it is that the wind chimes are our noise pollution.   I still haven't been sleeping so well at night, but I am getting 5 or 6 hours of sleep.  It is just that it comes in 1 hour to 1 and 1/2 hour blocks.  I'm still not able to urinate appropriately after surgery and can't feel my bladder when it's full.  The pain down there makes me fell like I have to go all the time, so I wake up and go to the bathroom.  Hopefully, this is not a permanent effect from surgery. Tiffany continues to be amazing (like always) and take care of everything for me.  I have figured out a way to get out of bed without having to wake her up for help.  I felt so bad waking her up every hour to help me.  She is so concerned about my successful reco

I took my love, I took it down - September 10, 2022

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  Sorry about the dark photo, but I'm in a hotel room and Tiffany is still sleeping and I didn't feel like getting up.  Also, the  Mac's camera is not really that great to begin with. Things are going ok post surgery.  I still have a considerable amount of pain in the gut.  the ibuprofen and the gabapentin seem to help take the edge off, but luckily I have been able to avoid the opioids.  They'll go into the lock box for the zombie apocalypse.  I suppose I should expect to be running a marathon just yet as it has only been a week and 3 days since surgery.   Tiffany continues to be a trooper, doing everything for me.  I couldn't ask for a better partner in this journey than her.  I feel bad as I don't think I will be able to ever repay the love and attention she is giving to me, but I am going to try. I haven't been thinking about much of anything lately as I guess I am focused on my recovery more than anything.  Maeve is doing an amazing job taking care of t

People get ready there's a train a comin' - September 9, 2022

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 It has been 9 days since surgery.  I am not going to say it has been easy, but I always assume that things could be worse.  I am sitting in the hotel room in the dark (Tiffany is sleeping), drinking instant espresso, and writing this blog.  I have had some bouts with pain that the DR assumes is gas trapped when I eat.  Some medicine seems to have helped with that. Honestly, still having trouble urinating as there must still be some healing going on down there.  This issue keeps me up most of the night or at least every hour.  Last night my brain was all over the place.  I took an Ambien, had a pot gummy, a gabapentin, and still couldn't turn my brain off.  In fact, I took the other half of my sleeping pill dose at 2:30ish and still couldn't sleep. Tiffany is amazing!  She is the strongest person I know.  She is so willing to give of herself for me I don't know how I will ever repay her for this.   Well - need to post to the other family blog. Love you all!

Mr. Sandman, bring me a dream - September 8, 2022

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 So it has been over a week since surgery and I am doing alright.  This will be the one of the toughest things I have done in my life.  Boot camp, recon induction, major cancer recovery list right up there.  The latter (the surgery) is definitely the most challenging, individually. As you can see from the time this was posted it is before 5:00 AM and I have been up since about 3:00.  It is so hard sleep at the moment.  I have to sleep on my back (I'm a side sleeper), I still don't know truly if I have to pee or not as there is so much pressure and pain in my mid-section it seems all the same sometimes.  What I can say is my large colon (which is disconnected at the moment), is in fact active.  I have farted several times and it feels like I have a giant gas bubble in there and possibly stool.  I couldn't pass stool right now if I tried, not that the equipment isn't there, it is just so damn inflamed and painful.  Hell, it took me 2+ days to start peeing well. Tiffany ha

I'm free, I'm free - September 7, 2022

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  I am in this picture, I kinda look like a Sith Lord,  That is because Tiffany is sleeping and I sitting at the desk.  I have been up all night as it feels like I have to pee every hour and Tiffany has to help me out of bed as there is no rail and adjustable bed like the hospital where I can get my body nearly half way up without using my abs.  She is so amazing!  The problem with urination is I have pain all through that area so everything feels like bladder fullness. It is nice to be out of the hospital and able to relax without being hit with vitals, etc...  I really just miss the bed and the break it gave Tiffany from caring for me. I won't know whether the materials they took from me had cancer until the pathology reposts come back.  They not only took the rectal component, but several lymph nodes around the area to check for cancer.  Since my CEA number was so low we are hoping that it holds true that my lymph node system was not full of cancer.   Well I need to get moving a

Stuck inside these four walls - September 6, 2022

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  So I may get out of the hospital today.  Still feeling a little weak, but getting better daily.  It's hard to get comfortable after your insides get open.   The has been a demeaning experience as I don't like being weak.  I do feel it has taught me to be strong about all of this, more so than I already was. I need to eat my breakfast. I love you all!

I was down at the New Amsterdam - September 6, 2022

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  As you can see I am still laying in bed.  Last night was rough as I needed to urinate at least 300ml by 5AM or they would reinsert my Foley.  I did not want that as it will delay my departure.  So I was able to squeeze it out, but now I'm exhausted   I have some other milestones like getting the epidural removed today which will help lead towards discharge.  I will stay as long as the Dr says I have to, but a I miss Tiffany something fierce.  She visits everyday, but it's not the same.  Ever since I got sick I've just wanted to be near her all the time. I love her and me - it's perfect and beautiful.   I should get up and walk etc...  I love you all!

I'm in a NY state of mind - September 4, 2022

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  So hospital day 4 and I am targeted for.release the next couple of days.  As early as tomorrow could be a possibility.  The care here has been great, They are a very professional hospital and thorough.  I don't get to eat the good food, but they have me on restrictive carbs due to chemo giving me diabetes.  They have been able to keep my blood sugar in the 120s today without insulin so I guess the diet works. Tiffany as always is being a trooper.  Coming down every day and fending for herself in NYC.  She's going to a bagel place today to get some salt bagels (her favorite) and a tuna sandwich.  She's been not eating lunch when she's with me so I'm glad she's getting something. So my breakfast should be here soon so I'll end this. I love you all!

Gonna wash the dust off my soul... September 3, 2022

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So waltzing into day 3 of recovery and my body is starting to accommodate the pain from surgery as I haven't pushed the pain button since 2:30 or so yesterday.   I'm still scared about all the cancer in my liver, but I guess I'm in waiting game two.  That is one of the worst things about this is wait and see what happens . Tiffany is doing great in the city, she gets lost sometimes,but she is such a trooper.  Maeve is keeping up the garden and is taking care of the animals as well as the house.  She has become such a grown up. Well, need to email everyone. Love you all!  

Never gonna give you up . Sept 2, 2022

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 So here I am in the hospital 1 day after surgery .  I didn’t feel like blogging yesterday.  Got some bad news after they made an incision fm my chest to below my navel, I had too many tumors for ablation.  So all I had was the pump installation and the colon resection.  It’s a set back, but I refused to be discouraged.  The ain isn’t as bad as I expected.  I have an epidural and use it on average about every 5 hours or so.  Sometimes shorter if I’m going to get up and walk.  Sitting and standing hurts Tiffany is awesome.  She is walking the mile from the hotel to hospital everyday! Hard to type on the little iPad.  Maybe in a couple days I’ll have Tiffany bring my laptop. For now I love you all!