Things are pretty grim. Beth has been off the chemo for almost three weeks now, and there is not a lot of noticeable improvement, to either her health and strength or her mental state. We got a clean scan a week and a half ago, but the visit with the oncologist just almost condemned her to about 6 more months of chemo. I don't think she can do it. She has lost so much weight, and is incredibly weak even after the time off from the previous chemo regime. 

On top of that, she's an emotional wreck. A lot of that is due to the amount of meds she's taking. Oxy for the pain, adavan for the anxiety, and vodka because she still really likes to drink. Combine all of those, and she's pretty unstable, both physically and emotionally.  

This is hard. Harder for her, but it's wearing me down. I love her so much, and she's really suffering. 

 

 

This is really hard. It's not hard like trying to run a four minute mile. It's not hard like trying to tie together a perfect mogul run down Castor & Pollux in Taos. It's hard because my wife is dying right in front of me. And there's nothing I can do about it.

 So much has happened, but it has been over three months since I updated this blog. Maybe I'll do better at the updates, but probably not. 

Beth and I went to Houston in September for another opinion from MD Anderson. After some imaging and conversations with the oncologist at MD, it looks like Beth's cancer is in remission. Great news indeed. 

Since then, Beth has gone through about two weeks of an oral chemo drug that is kicking her ass. As scheduled, she was taking a week off from the drug and she had a phone consult with the oncologist from MD Anderson. Much to our surprise, the diagnosis has been changed back to pancreatic cancer rather than bile duct cancer. As such, our resident oncologist here in Albuquerque has stopped the oral chemo and has scheduled another consult in a week or so.

I'm going to push for a hiatus in any further chemo until she can regain some strength. She is basically bed bound as she is always incredibly tired and fatigued all the time. After doing so research, and checking her last labs, it looks like she is anemic again as well as somewhat malnourished as her nutrient absorption is all out of whack after the Whipple surgery. Hopefully all of these symptoms can be dealt with if we can find a nutrition program that addresses those issues. That and a lot of Vit B for the near future.

So, things are better than they were. She's gone through so much this past year and I feel so bad that she is dealing with this shit.

I'll talk some in another entry about how I'm feeling after a year of watching my wife fight to keep from dying.  

Onward.

 Hey blog, it's been a while. 

So much has happened. Briefly, Beth spent almost all of July and part of August in Houston undergoing a huge surgical procedure to remove the cancerous tumor on her pancreas. The surgery lasted 9 hours. The surgeon did his best and both Beth and I are grateful for his effort. We're also incredibly indebted to Josh and Trish for providing Beth a safe and loving home to recover after the surgery. The flight home from Houston almost killed her, but she's pretty much over that.

Beth's been home for about 3weeks now. Our first visit to the oncologist was yesterday. Nothing but bad news.

Again, long story short, Beth (and me) were given a survival time frame given that her cancer had no notable reaction to the three months of chemo she received earlier this year. That means that any future treatment is most likely not going to make any huge inroads in eliminating the disease. I'm numb. I'm really really sad. 

We have a lot to think about for the road ahead. Fuck cancer.

 Back home from another doctor appointment. I know Beth is totally burned out from all this, but it hit me today how almost meaningless all these trips are. This one was just a checkup, so no procedures today. That's great, but it's kind of a wasted trip. I'm trying hard not to complain, but I feel like I'm just this cog that's expected to do everything, and right now I don't want to do shit. 

My bride looks totally worn out. She's a shell of herself. She's being tortured and quite possibly for nothing. This sucks. Fuck cancer.

 Wow, over two months since my last post. Time drags on and speeds by at the same time. 

We've had some good days, sometimes even several in a row. But, in general, Beth feels like shit most of the time. Her mood is very fragile, as the cancer eats at her body and the chemo fogs her brain. 

I'm trying so hard to be supportive, but truthfully, I'm losing it. I am feeling so lethargic, and not able to do the simplest stuff around the house. Laziness is part of it, but most everything seems kind of hopeless right now.

Beth's treatments are coming to an end, for now. If all goes well we will then go to Houston for the surgery component of the treatment. And then we wait and try to take life a day at a time and not worry about what will come. Unfortunately, I fear I will be losing my Beth in the not too distant future. I know that we never know when our time on this spinning rock will come to an end, but to know how and why it's going to happen really hurts. And watching her suffer through all this is breaking me.

Onward.

 So, time is dragging on. Nothing exciting happening, or any progress in treating Beth's cancer. It's all on hold until the start of the chemo treatments. Yay.

I need to concentrate on the present, and not freak out about what's to come. 

So much in my head, so little motivation to write it down or deal with it.

 The weeks go by, and, in reality, nothing much changes. At least any change for the better. Beth is still really hurting. The pain in her arms is apparently caused by "referred pain" from the tumor in her pancreas. According to her oncologist, it's pretty common. Her mental resolve is also, not surprisingly, starting to waver. She's not doing much more than hanging out in the bedroom. One bright spot is that she is eating more. 

So much needs to be done around the house, and I'm not doing it. I'm also just stuck. My angst about what's going to happen and how much I'm going to have to do keep things moving has just about worn me completely down. But I have to stay strong. The weird part about it, is the more I give into the angst by not doing routine things, the worst it gets. I guess that's the self-blame cycle working overtime. 

I also pulled the trigger on buying a new TV for the living room. And, given the circumstances, I'm all stressed out about it. Why? So many reasons, and none of them good. 

I'm so sad and worn out from all the shit that tumbled down on our safe and mostly happy home. I'm so sad that I may lose Beth.

 We  have an appointment with Dr. Lin at the NMCC tomorrow. This quick appointment happened because we sent Dr. Lin a message about having to wait until March for our appt. with MD Anderson. Meanwhile, Josh sent us an offer to have his GI doctor send a referral to a pancreatic surgeon at Baylor Medical also in Houston. Now I"m just confused. I'm also worried that taking Josh up on his offer is just going to muddy the waters and result in even more delays. Our dear friend and neighbor Martha has suggested checking if the Baylor doctor will do a tele-med visit so maybe we can avoid having to go to Houston. It's worth seeing if that is a possibility.

On a personal note, our neph Matthew sent me a message asking how things are. He's the first person I've told that I'm barely keeping it together. I'm trying to take my advice to "stay strong" to heart, but it's getting really hard to do. Onward.

 So everything is now in motion for a trip to Houston for the treatment of Beth's cancer. I'm a bit surprised that the first available appointment is not until March. Maybe I shouldn't be, as there are a lot of people with cancer that are seeking treatment with MD Anderson.  I hope this delay won't worsen her condition. I'm normally a patient person, but this is going to test that patience.

 Beth's first appointment with Oncology after her MRI's is Friday. She woke up this morning after a second really bad night. It looks like she needs to be aware that eating late at night is not agreeing with her. So, with that said, I am starting to wonder why it's taking so long to get back with our doctor. I read the MRI's and it seems like the cancer has been caught really early, and the chances of surgery being an effective treatment are pretty high. Of course, I'm no doctor, but I can read the results. So why are things slowing down? Beth is pretty much getting to the end of her reserves, and I don't know how she's going to be able to handle any surgery given how weak and tired she's getting.

This sucks so bad. I'm trying to stay strong, but I still end up crying off and on all day. I can't show her how sad this makes me, as she doesn't need any negativity right now. I always tell others going to this kind of trial to "stay strong", and I'm trying to take my own advice. It's really hard.

 I know I am but one of many that has had to go through giving care and comfort to a loved one that has cancer. I know all my friends are willing to do anything to help. But why do I feel so alone? I'm tired, and unable to do much more than hang around and surf the net. The kitchen is a disaster, the living room is a disaster, and I'm not doing anything. Beth tells me I'm being too hard on myself, but I'm so tired. 

Beth seems to be in constant pain. The doctor says most of what she's feeling in her back and arms is from referred pain. Her mood is flat, and she keeps telling me she feels like crying, but she never does. I guess I'm doing the crying for both of us. 

I need to get motivated and do some stuff around the house. Maybe that would make me feel better and more "normal". Maybe.

 So much to write about even after a few days. 

Beth is starting to feel the effects of the cancer. No appetite, and in general, just tired. I'm hoping this is more of an emotional reaction but who knows. It's still early.

I spoke with an old friend of mine, now a retired general surgeon in Denver. Vaughan had a lot of good info on how pancreatic cancer is currently treated. I was mostly focused on where was the best place to go for a Whipple procedure once we get that lined up. It seems likely that a Whipple will be necessary, so his input was really appreciated. Right now, I'm thinking we end up in Houston at MD Anderson, if that can be arranged. Houston will be a good place to hang, since Josh and his family live near there. I'm worried about flying in, only  since I have no idea how capable Beth will be flying back. Maybe a one-way ticket and a dead head rental car ride back will be the way to go. Planning ahead doesn't hurt, but worrying about it now just feels like I'm piling it on.

Vaughan also said that given what we know about the cancer, it was found pretty early, and her chances of getting some more good years are high. Even with that "good news", I hate the sound of that. Mortality is not addressed easily, especially when it's someone you love. I can handle any threats to my mortality way better than I can Beth's. It's just like when I was kayaking. I was always more scared about watching one of my buddies getting washed away and drowning than I was about myself. Must be some form of plot armor.  

Onward.

 So Christmas was awful. We were invited to a friends house where she had everything ready for lunch. Beth decided she was well enough to prepare a ham and corn casserole. Why? No one except Beth wanted to do that, and because it took so long, and because she was totally exhausted by the time these dishes were ready, our host called in tears and cancelled the lunch. 

I woke up this morning feeling totally overwhelmed knowing that the cooking drama was going to happen no matter what I said. Sick or not, Beth needs to stop doing this control bullshit when it comes to food and dinner invites. Maybe it's too late. I'm so scared that this might be the last time we have to worry about this. I hope I'm wrong.

 Better day today, strength wise. Beth got up and did some dishes (since I'm a lazy fuck) and we watched a movie. Now a shower, and some more relaxation. Good things come with resting and getting some strength back. The jaundice has pretty much resolved itself. Onward.

On small glitch. A comment was made about how her friends are taking the news. The comment: "Since the cancer hasn't metastasized, no one is taking this seriously". My only response is she hasn't been on phone listening to all of our friends crying about the diagnosis. Can't really say much more.

 Bad day today. I'm having a real hard time getting around the fact that Beth is suffering from the effects of the cancer. No brave face or denial needed. She's always really tired, has phantom pains, and can barely eat. It's not like she's actively dying, but she's not feeling well. It hurts. 

My barriers are not very strong today, and I'm really sad. You don't know what you've got 'till it's gone, or in this case, slowly going.

 It's been a long time since I posted. But things, as is their want, change. Beth has pancreatic cancer. She hasn't been well for over a year, with recurring bouts of anemia and abdominal pain. The cancer finally showed it's hand when she developed severe jaundice and overall weakness. 

This was about a week ago after spending 5 days in the hospital. A stent was placed in her pancreas in order to drain accumulated bite in an effort to relieve her jaundice. It may be working , but it's damn slow. I keep telling myself it took weeks to get to the level of jaundice she had, so it will probably take a while to clear up.

So, current status. She's incredibly week as the anemia has returned. Hoping to start some sort of treatment this coming week, even if it's a just a return to the infusion clinic for iron infusions. She needs to get stronger for what may be coming.

I'm still trying to get my head around the fact that I'm going to lose her. I don't want to be alone, but it doesn't really matter what I want. I want her to be as well as possible as this illness plays out to the invertible conclusion.

I'm going to try to update this record, mostly to try to keep my head on straight. It's going suck.

At approximately 3:00 AM Monday morning, New Years Day 2018, my sister, Sheri Dawn Porter took her last breath.

I was called that Saturday evening by the hospice nurse that Sheri had taken a big turn for the worst and was not expected to live through the weekend. I went over to Casa de Rosa that Sunday and spent about 4 hours hanging out in her room while she quietly lay dying. I spoke to her about lots of things including remembrances and short term expectations. She was basically unresponsive, so I don't know if she heard me or not. Maybe. Once in a while her eyes would partially open, but I don't think she could focus.

And just like that, she shuffled off.

And now, I'm the last one left that originally lived at 7621 Winter Ave.

It's hit me pretty hard that all are now gone. I'm surprised at that, as stated in previous posts, I wasn't particularly close to Sheri. More than anything her death represents yet another example of our mortality.

RIP Sheri. You had a very hard life. Your mental illness led you into the dark depths of addiction and left you sick and weak. I am and will be forever grateful that there was a social safety net that allowed you receive the care you needed for the last few years of your life. Not everyone gets that, even though all of us deserve it.

Onward.

So how do I justify my resentment to giving my sister holiday gifts?

A back story is warranted. Said sister has had a drug/personality disorder problem since her early adolescence. She went through a couple of marriages, one of which was a jailhouse wedding, while both parties were doing time for armed robbery. When she was out of jail, she tortured our mother by alternatively begging and then threatening mom for money. Always $20, and always for drugs.

When I got married, during our rehearsal dinner, said sister and her "friend" broke into my parents house and stole money, checks and jewelry.

Once my parents passed away, and after the sister got out of jail for the last time, it was now my turn to watch over her. Needless to say, her time with me could be characterized as tough love, but minus the love part.  I forced her in any way I could to be as self sufficient as possible and maybe make some positive choices in her usual cork-in-a-stream lifestyle. The end result was her spending almost a year in a local homeless shelter until the shelter's social workers managed to get her signed up for SSI disability payments.

That SSI allowed her to have and maintain a small apartment at a local low income complex. Sounds great, until she let some low-life hang out in her apartment (drugs again) with the result that her apartment became infested with bed bugs. Around this time, her already frail health took a major turn for the worst, as her COPD prevented her from navigating the single flight of stairs to get into and out of her infested apartment. Rescue was called, and she was taken to the hospital for what would become an extended stay in intensive care, rehab, and ultimately an assisted living facility. When her abandoned apartment was finally cleaned out, we lost a lot of bedbug-infested family keepsakes that she had managed to take from our parent's house.

So now sister is a resident of a fairly nice assisted living facility that is thankfully paid for in full by SSI and Medicare/Medicade. She has been on hospice for over a year now as her COPD has basically rendered her bed bound and almost helpless.

So this brings us to the 2017 holiday season. Sister calls several times every week on the phone I bought her (service through Life Link) to ask for things and to tell me how shitty she feels. She has recently escalated her requests because it's Xmas. And here I sit trying to be gracious to a person that has never done anything for anyone else.

Anything I do for her is because I am trying to be compassionate to a very unfortunate human being. It has nothing to do with being related to her. Both of us were adopted, and by the luck of the draw, she and I were thrown together and raised by the same family. We are certainly a case example for nature v. nuture. I'm not saying I didn't and don't have my issues, but I have managed to not spend almost 20 years behind bars. And with that said, every once-in-a-while I need to tamp down the resentment and memories of how cruelly she has treated my entire family.

A lot of these emotions are tied into the general expectations that come with this time of the year. Hopefully, with the New Year on the horizon, I can once again help sister out with a feeling of basic compassion without the deep down resentment.

Yeah, right.

Six years + since my last post here.

Let's dust off the blog and post an update.

My career as an engineer is, probably most certainly, over. Done. Kaput. The Water Utility Authority did me in. It ended with somewhat of a conflict, with me going up against my POS boss and telling him, as befits my advanced age (60!!) to go fuck himself.  Felt pretty good.