Current Situation

On Facebook, which I spend WAY too much time on, there is a thing folks do where they post a picture and comment that this is their "current situation." Usually, it's a pic of them on some tropical beach with a slushy, rum-spiked, umbrella-adorned drink in their hand, and maybe their feet in the picture with the ocean in the backround as they lay on a beach lounge chair snapping the pic. The last "current situation" pic I posted on FB was a pic of my home and the view down the block during a big snow storm. Well, even that seems more fun than what my current situation report will be today. But, that's life, that's reality, "that's just the way it is." (Going to see Bruce Hornsby next month and that song lyric comes to mind a lot.)

My current situation is a double cancer battle update. So, firstly, Tim. Tim is doing well, thank GOD. Last I posted, he was taking a month off chemo so he could feel his best over the Christmas and New Year holidays. Well, that short hiatus has stretched to 5 months and still goes on today. His numbers are hardly budging. Oh, they are moving, and that direction is up, but, it's VEEEEEEEEERRRRYYY slow. He sees two different docs at his appointments. The one told us she is really nervous keeping him off treatment. She's afraid that his MM could get "traction" and suddenly turn aggressive and then may not respond as well when he goes back on treatment. She told us in April that, "if you were my family member, I would recommend you be on treatment. We can lower the Dex if that's really causing problems, but I think you should be on something." It's scary to hear that and I know it could be true. At his next appointment in May, we all agreed he would go back on. The choice was given to continue Velcade or try Ninlaro, but, with so much work coming in for Tim, he did not want to risk new side effects and the unknown of Ninlaro, even though it would save him a trip to the cancer center every week, so he was all set to do Velcade again. But, we changed the appointment by one day to be able to get to a softball game we wanted to see. And, we wound up with his other doctor, who took one look at his labs, saw his m-spike only went from .14 to .15 in 6 weeks, and said, "go home, you're fine, you don't need to start today." Now, while we are really thrilled to hear that, even he has mentioned that there's a chance his MM could get stronger going on and off treatment. In Tim's case, it's really because of the history of how his disease has behaved in the past, that makes this doctor feel a little less nervous about letting him stay off. But, there is always that chance that it will start to misbehave. I suppose, actually I know, that chance exists with MM even when you're on chemo.

It's a hard call, as they all are. Your life and your bone and kidney health hang in the balance and you surely do NOT want to sacrifice any of that. But, that's what we're doing, staying off for now. Going back in 7 weeks and we will see where we are at then. I imagine, as long as there are no surprises, he may likely be able to avoid chemo for the summer. We feel blessed, and scared, but mostly blessed.

Now, onto my Dad. Sadly, his update is not as uplifting. After 6 cycles of chemo, which he tolerated very well, and a gamma knife radiation treatment to get rid of 3 small mets in his brain, things were looking good. He had gained back most of the weight he'd lost. He felt good, and his spirits, well, they are so good, I don't know how he does it. Maybe he's putting on the game face around us "kids" but, he really seems OK. His lung cancer doc said he would stay off chemo about 2-3 months now, as his scans looked good, he considered him stable, and I guess, unlike MM, they don't keep lung cancer patients on continuous treatment if they don't have to. As the doc said, "we don't want to kill you with the chemo." Then, we got blind-sided. He has brain MRI's every 2 months to follow up after the gamma knife he had in November. January's scans were great. Since the chemo had worked so well, we were totally not expecting to hear what we did after the March MRI. Both the neuro-oncologist and the radiation oncologist, an old friend of my Dad's, walked into the exam room at the same time. My immediate thought was, "oh shit, this isn't good." And it wasn't. They found 10 new brain mets. It was devastating to hear. They scheduled another gamma knife treatment, but warned us that the MRI they do after they place the head frame on him could find more, and if it was too many more, he would not be a candidate for gamma knife anymore and would have to go for whole head radiation. Well, that's what happened. Got the anesthesia, had the frame attached, did the MRI, and they found 10 more new ones. SHIT again. They put him right in to have the face mask molded to start whole brain radiation. He started the next day and did 10 days of treatments. His MRI to check out how that worked is in a week. We have now consulted with the other doc who does the immunotherapy and clinical trials since the chemo did not stop the lung from sending new mets to the brain. He will start Keytruda, along with a trial drug that goes after another target his cancer is positive for, in about 2 weeks. He told, me, "what choice do I have? I have to go aggressive." His hair fell out and his scalp is peeling from the radiation. It's sad to see him look like that. His physical appearance has changed so much since last summer.

I don't have to tell anyone who may read this how devastating it is to be going through this, as most are living on this cancer roller coaster too. There is a good chance the whole brain radiation is going to cause memory issues for my dad. That's going to be rough. My mom has been dealing with dementia for some years now. She can't be his caregiver. I'm not sure if she could even pick up the differences if he starts to slip cognitively. I had hoped they were on their way to selling their condo and moving closer to me and the cancer center, and into an assisted living facility. But, my last conversation with my Dad did not sound like that was forthcoming. This creates even more stress for me. They live about an hour away. My dad drives fine now but that could change at any time. How he feels could change at any time too. My Mom gets VERY nervous if he's not feeling well. She knows that she is not really capable of helping much and getting nervous only scrambles her thoughts even more. There's also the problem that they live right down the road from the hospital that seriously mis-managed his case at diagnosis in Sept. and if anything were to happen to him, he would find himself back there while his doctors and MUCH better care are here in HUMC. No ambulance is going to drive 20+ miles away to bring him to Hackensack. They will bring him to the closest ER.

I am torn. On the one hand, I want him to live out his life as he wants to. On the other, there is a common theme in my life that has brought me SO much grief. And that is this......people never listen to me, and, when the consequences of their not-so-great decisions hit, I seem to be the one who has to pick up the pieces and figure it all out. I REALLY don't want that to happen in this case. What can I do? I can't force him. My mother has always been dead-set against winding up in assisted living or a nursing home, but, there will be no choice in her situation, at some point. When my father first got his diagnosis, it seemed he realized he had to get this done so that his kids did not have to do it. My one sister pointed out months ago, that going into an assisted living situation with my father would be much less stressful on her. It's true. She would feel safer and be able to get used to the situation without being alone. Somewhere along the line, it seems my dad changed his mind. It sounded to me like he will put this off and probably never make the move and I know that will be much harder on all involved.

Again, the Bruce Hornsby line, "that's just the way it is." I've gotta just take things as they come. As a good friend said to me a few weeks ago, "no matter what comes your way, you always figure it out." I just wish, sometimes,(all the time, really) that it all didn't have to be the hard way.

So, that's the current situation. Oh, and last but not least, our daughter is home from her sophomore year at college. I cannot believe that. 2 years done. It's surreal. She got the waitressing job back at the café she worked in last summer, so that's good. It's great to have her home. As good as Tim and I have done being empty nesters, we miss her, and being a part of her daily life. It's a welcome distraction for us.

That's a wrap, I guess. Hopefully, I will have some better current situations to report this summer.

It's the holiday season

It feels like I just took down the Christmas tree and got my house back in order and here we are again. It's been a fast year. They're all fast. I swear, the older I get, the faster they go.

So, we will start with Tim. He is taking a month off chemo. This is the longest he's ever been on it (10 months) and he's not happy. Dex is getting to him, making concentration almost impossible and crash days have him sleeping on the recliner, usually with a miserable headache. In addition to his regular body aches and pains, he has acquired more. I have to book doctor appointments to see what's going on with his arm and he recently told me his tailbone area has been hurting too. This will have to wait until after Christmas and I sure hope they don't find anything serious. Sadly, a friend he's known since school days died of a heart attack 2 days ago. This is the 4th friend from his old group that has passed, all since Tim's diagnosis 10 years ago. Johnny was born the same exact day as Tim, which hits home even more I think.

My dad is doing much better than he was when I posted last. I do not know how he was able to pull himself out of the very dark place he was in during and after his hospitalization, and I'm not sure if he's just being a heck of an actor when we're around, but, he seems much better. He put some weight back on and he is very surprised that he actually feels fine on chemo. I think he thought he'd be sick as a dog on it. He's tolerating it really well, AND, on Dec. 1st, we found out that it's working really well. WOOHOO. Thank God. It was a huge relief for him. He will have his brain scan done in early January to see how the radiation worked on those spots, so I pray the news will be good. He is back to driving so I just meet him at the cancer center every Tuesday, as well as at other doctor appointments. His left vocal cord was paralyzed from the nerve being stretched by the cancer so he just had a procedure done on Friday where they use a plastic surgery filler to plump it back up. His swallowing is much better and his voice is stronger. He sounded like he had a really bad case of laryngitis before and it's hard for people to hear him, especially on the phone. There is no news about them selling their condo. My mom is adamant that she is not moving. I don't think she realizes how much her memory issue has progressed. My dad finally took the car keys away from her. It was long overdue. I will wait until they hash it out between them, if they ever do. I can't force them to move, but, I know several people who are in really bad places right now because they waited too long. It's something you have to do before the "shit hits the fan." Once it does, going through the process of moving and making decisions is much harder. Oh well, what can ya do?

On the rental news, I got my apartment rented. A nice couple who is expecting a baby in January is in there now. Hopefully, I get a break from re-renting apartments for a while. I sure hope so.

Olivia comes home for winter break tomorrow night. She has had to really buckle down and work hard this semester. Last year was much easier, with mainly Gen Ed classes. This year is different. Sadly, her roommate moved back home because her dad was dying of cancer. He just passed yesterday. So sad for this family. Her roommate is a triplet, so they have 3 kids in college and now this poor man loses his life. And, I feel bad that my kid doesn't seem to be able to get away from the C word either. Her dad, her grandfather, her roommate's dad, and a boy from her friend group just lost his sister some months ago. A girl she used to cheerlead with just lost her mom in Oct. too. It's too much, this cancer nonsense. TOO DAMN MUCH !!! I can't help but wonder how scary this all is for Liv. She does not talk about it, but, it must be.

The bright spot in our lives is her though. She loves her school, the friends she has made, her 2 jobs there. The rest of our lives might be turning to crap, but at least my kid is happy. As any parent knows, if your kids aren't OK, nothing in your world is OK.

So, I am hoping we get to celebrate Christmas in normal fashion. I just came down with my second cold in a month. Someone is run down. I have to kick this thing so I don't have to cancel Christmas with my family. We've had to do that too many times these last bunch of years. Our get togethers have already shrunk considerably. But it's darn depressing sitting home sick in your jammies on Christmas and not seeing your peeps. Hoping that's not the case.

Happy holidays, everyone. Hoping 2018 is a better year for my family and a great one for you and yours!!!

Nothing stays the same

Well, the only thing that doesn't change in life is that everything changes. My dad's life is unrecognizable from what it was less than 2 months ago. At times it's surreal. At other times, so much has happened since 9/2, it feels like a lifetime of stress and sadness has gone by. My dad has stage 4 squamous cell lung cancer. And, just when we thought we'd heard the worst, his lung cancer doctor sent him for an MRI of his brain, and, of course, they found it there too. 3 small spots. Oddly enough, the radiation oncologist that is going to do gamma knife radiation on him to try to get rid of those spots is a guy who used to sit in with my dad's poker group years ago.

I am stressed to the max. I spend all day at the cancer center with my dad on Tuesdays and then go back on Thursdays with Tim. Then, there are the other appointments my dad has too. It's crazy. I am also touring assisted living places because I really don't think we can keep this up without my parents moving closer to me and where he is being treated. He lost a lot of weight and strength from that long hospitalization and he is so depressed and worried, he is not doing his exercising. He is still using a walker and his clothes are literally falling off him.

The stress is affecting me, no doubt about it. And, as always, I am taking care of everyone but myself. I've said it before, I suck at self-care, and, yes, I know the whole thing, "I'm no good to anyone else if I get sick" and "put your oxygen mask on first so you can help others." Yep, I get it. Still suck at it though.

I am also still trying to rent my apartment. The market is flooded with rentals right now and I have turned down a few people too. I don't want to deal with issues. I will wait to find someone that doesn't come with problems. I just hope it's soon. Too bad it has stairs. I could put my parents there.

Oh and my kid called last night. There was another incident at her college that almost warranted another lock down. Some sketchy guy walked up to a female student asking where the most populated area of campus was and saying she would see the results of her "help" on facebook live later. WTF? And if that wasn't enough, one of the girls Liv was supposed to rent a house with next year, stalled off and they lost the house. The new house she's looking at with a few other girls appears to be right near two registered sex offenders, according to a list someone posted yesterday to warn people where not to trick or treat in NJ towns.

Did I mention I was stressed????!!!!

As Charlie Brown would say.........GOOD GRIEF. 

I need a bigger fire extinguisher

I have often said that my life feels like a constant battle of putting out one fire just for another to crop right up. Well, these days, that theme keeps playing out over and over. So, last we knew, both my apartments were re-rented after 2 broken leases within just a few months of each other and I went right into my father going into the ER the exact day our new tenant moved in. Here we are, just over 3 weeks later. I had to fight to get my father moved to the hospital near me for better care. It was one hell of a battle. The doctors and staff at the first hospital were screwing up like crazy, even going back and forth telling him he had kidney cancer, he didn't, he might, he definitely didn't, and he probably does. ARE YOU KIDDING ME HERE???  As it turns out, he has squamous cell lung cancer. The freaking kidney doctor told him it was encapsulated and operable. A few days later, the oncologist came back after his own hernia surgery and told him it was incurable and would be treated with chemo or radiation. HUH?  But, they still don't know what the deal is with the kidney and bone lesion. He either has renal cancer and lung cancer, or lung cancer that spread to the kidney and bone. Maybe.

On Friday, the 15th, I finally got him to Hackensack. I got the best doctors on his case and they came in on Monday to make a plan. They did a biopsy of his kidney and the spot on his lumbar spine the following day and I finally got him home the day after that, after 19 days of pure torture. He was playing 18 holes of golf just a few weeks before this happened. He is now so weak he is using a walker. He's also devastated and depressed. My mom's memory issues are worse than ever with the stress and we took her car keys from her, something that should have been done 5 years ago. So, on top of what my dad is going through, my mother is fighting with him.

I stayed at my parents for a few days to take care of them and do some cooking and cleaning up around there. I came home last Friday night and decided to take in our high school football game the next afternoon to try to relax. Our new tenant is a guidance counselor and asst. football coach at the high school. As I am walking into the game, I get a text from our downstairs tenant. There is a dog wailing and screaming in the other apartment. Apparently, new tenant doesn't give a crap about our rules, his parents come out to visit from Long Island and leave their dog in the apartment. I go home, get the keys and a leash, get the dog out to stop whatever peeing and damage it might be doing, and evict the tenant. He calls a few hours later when he gets the messages I left, furious at ME for opening his apartment door. I tell him, don't you dare turn this around on me. He claims (LIES) that his parents dropped the dog off without his knowledge. I call bullshit and tell him he's out by the 30th. His family causes a huge scene in front of my rental, which has my other tenant petrified and about to call the cops. Then he and his friend or brother come to my house and cause another scene here. I tell him there is nothing to talk about, pack your shit and GET OUT.  I am done taking shit from tenants. JUST DONE.

On top of this, for the first time, Tim's numbers did not go down from his Velcade cycle. So, I am worried sick about that. Then, we had to drive down to Liv's college to tell her in person about my dad because we were supposed to take a trip to Vermont in 3 weeks to visit her buddy at UVM, like we did last year, and I had to tell her it might be off. Of course, with all the stress, my IBS is insane and I am constantly running to the bathroom or unable to eat if I have to go anywhere. In two days, I go with my dad to the kidney surgeon and find out the results from the biopsies. My dad is beside himself with fear and grief. I don't know what to do with my mother. We do not want her in the room with us. She cannot be left alone in a waiting room. She could get up and leave. She will be furious if we leave her home.

Honestly, it's all just too much. We have not found a new employee for Tim's business. Interviewed one kid and after asking Liv if she knew him, found out he was a druggie.

Basically, there are worries in every single sector of our lives, BIG ones. I've just had it. Tim was hopped up on dex on Saturday when this whole scene happened with the tenant and was ready to get in a fist fight with him. I had to force him to leave before the tenant got back there. Luckily, he had something he had to do for work right then, because when he came home later and found out what happened, well, I know we'd be looking at an assault charge right now if he'd been there.

Frankly, I just want to run away. :o(

I CAN'T EVEN..................................

In the last 4 months, I turned over both apartments in our 2-family, both due to broken leases. Buying a 2 family home for a future investment seemed like a good idea at the time. Not sure it was and Tim being diagnosed with MM 13 days later???? Um, yeah, not such a good idea, for sure. I've had tons of turnover. Luckily, we made this place beautiful so both apartments rent fast, BUT, I'm sick of all the work and stress of it. So, I turn over the big one the week we are moving Liv back home from college and turn over the 2nd floor one a day after we moved her back last week. The guy moved in on Saturday, after Tim and I put some finishing touches on the place. Then, we showered and ran back down to Monmouth University to see the first football game in the new stadium. Liv works for the athletic department and was selling programs when we got there. Halfway through the game, I had to go to our truck and lie down. I didn't feel well. Coulda been the hot dog, could be the recent adjustment in blood pressure meds, could be all the stress I've been under lately. Who knows. After the game, we drop off a few things in Liv's dorm room and hit the road about 7:30 in the rain. We are just exhausted, hungry, and I just want to go to bed. My cell rings. It's my dad, asking where we are. I tell him, "on the parkway." He says, "what exit" and I know something is wrong. I ask what's going on and he tells me he thinks he's got a kidney stone and is having my mom drive him to the hospital. We change our route and go out toward their area and find the hospital. So, what looked like a kidney stone or UTI, turns out to be advanced kidney cancer. The man was just playing golf a few weeks ago. They see a mass on his lung and some questionable areas on his bones. His left kidney needs to be removed.

I cannot even tell you all that's happened since then. But, I am bereft. My mom has moderate dementia and needs care also and is so afraid and confused. AND, they decided to do a lung biopsy before the kidney surgery and caused a pneumothorax that now has a chest tube in his side and rendered him unfit for surgery. They did not need this biopsy done prior to the kidney removal but, they did it anyway and now my dad is too compromised to get this kidney out. I am petrified of him getting pneumonia or a blood clot. He has been immobile for a week now.

He just re-did their wills and health care proxies and such, appointing me the caretaker of it all because my older sister moved out of state.

I CAN'T EVEN........................................

It is not A TUMOR (said in Arnold Schwarzenegger's voice)

So, thanks to the July 4th holiday, we got Tim's pathology report a week later than we would have, as I may have mentioned would happen in the last post. Actually, it was a tumor, but, it is something that has been reclassified in recent years as not being a cancer. It's this: "A noninvasive follicular thyroid neoplasm with papillary-like nuclear features, or Niftp, a type of tumor that was previously considered a kind of cancer, but has been downgraded by a panel of doctors."  Tim's surgeon told us at the first appointment that Tim either had this or thyroid cancer. Thankfully, it was this NIFTP. He will be monitored for his thyroid hormone levels to see if he needs supplementation and have occasional sonagrams on the other side of his thyroid gland to monitor the tiny nodule that is there, but he does not need to go in and get the other side removed or be treated with radioactive iodine. SOOOO. we exhale that we don't have to get all up to speed on another cancer to treat and survive. His doctor said that they used to treat this like a cancer but the doctors realized it did not act like a cancer so it has been reclassified. It's kind of like when a woman has DCIS of the breast. They take it out, but, it's not really a cancer at that point.

Of course, we had to make it interesting somewhere along the line, didn't we? The nurse who went to start Tim's IV before surgery missed the vein in his hand. Not sure how she managed that, because Ray Charles could start an IV with Tim's veins. BUT, she did. So the anesthesiologist took a huge bore IV, which the nurse exclaimed about, and saying, "he's a big guy, he can take it" he shoved the thing into the vein in Tim's other hand. Well, he was wrong. Tim's wrist and hand has hurt ever since. The pain went up his forearm within a few days. We mentioned it to the nurse who removed his stitches and she told him to use warm compresses but he never did. We got home from vacation and Tim noticed the vein in the top of his hand was hard and still hurt. SO, not even home 24 hours and we were off to the doctor. Turns out he developed phlebitis from the trauma of the IV and the doc said he probably formed scarring and clotting in his vein there. So, NOW, he is doing the warm compresses. UGH. I am trying to look on the bright side, he avoided the cancer, but, this guy had no good reason to shove a railroad spike up his vein instead of a normal sized IV and Tim paid the price.

So, that's the update from here. Hoping the rest of our summer goes smoothly. Preparing to tell our daughter what's going on with his MM though, so I am dreading that like the plague. I don't like this myeloma bullshit. I just don't.

                  

Thyroid lobectomy.........CHECK.

Well, I can't see this as a bucket list item, but, it is scratched off nonetheless. Tim's surgery went very well. I LOVE this surgeon. He is not only a fantastic doctor, but also a really nice man. So great when those two things collide. Tim did great and the day went like a well-oiled machine. My older sister, Lori, flew all night from a business trip, starting in Billings, Montana, going to Seattle, and then getting a direct flight from there to Newark and arrived by 7 am. She rented a car and got a hotel room within a mile of the hospital. My younger sister, Cathy, drove down from NY state and dropped her 2 kiddos at the hotel to swim and such with Lori. When Tim and I got into the parking garage, there was Cathy, walking around lost, trying to find the signs for the medical plaza elevators so I opened the window and said, "jump in." She turned around and relief flooded her face to see us. We parked and got to the surgical floor on time. The doctor ran a bit late due to having to finish up his morning office visits, but Tim went into surgery at 12:45. The anesthesiologist was SO nice and upbeat. What a personality and so great that he tries to put people at ease with it. We were told that removing one side of the thyroid would be about 90 minutes and if the frozen section test revealed cancer, the whole thing would be removed, including the parathyroid, and take about 2 and 1/2 to 3 hours. After an hour and 45 minutes, I saw on the monitor in the waiting room that Tim's case number had been moved to post-op. I was hopeful that this meant he was only losing half this thyroid and we were going home instead of being hospitalized overnight. I was right. The anesthesiologist came out first, said everything went fantastic and he woke up beautifully from anesthesia. The doctor came out a bit later, said he saw nothing suspicious and the frozen section revealed the same atypical cells seen in the biopsy but no obvious cancer. We still have to wait for the full pathology report though, before this is a done deal. Actually, it won't be completely done. He will have to have sonograms on the nodule on the other side from time to time and be monitored for his thyroid levels by an endocrinologist. But, this was the best case scenario we could have had yesterday, so, we'll take it. I decided to distract myself by teaching Cathy how to crochet while we waited. I learned a few months ago and LOVE it. Well, so far, she sucks at it, but we had a lot of laughs and she sees how relaxing and fun it is so I sent her off with a new skein of yard and crochet hook and she will you-tube herself to success. Tim did well in recovery. Wish I knew about this doc when I had my sphenoid sinus surgery 2 and 1/2 years ago. We hauled into Mt. Sinai for mine and this guy coulda done it. Tim had his own nurse throughout the first stage of recovery. She sat there, with a computer, and monitored only him for an hour and a half. Freaking awesome. Then, he went back into the pre-op area for the next stage of recovery and I got to stay with him. He ate and drank a bit, had to prove he could pee before he left, and then it was IV out, get him dressed, and bring my guy home. Cathy and Lori spent the night with the kids at the hotel so Cathy could avoid a very trafficky ride home on a Friday night. Lori will get to see my parents, who just got home from a trip to Maine yesterday, and us, before she flies back to her home in VT tomorrow. Of course, Tim's entire family was MIA, as they always are. But, I refused to be petty. I called his parents in VT and kept them posted along the way, even had Tim call his mother last night so she could hear his voice. These people have been so awful to me, to us, but, I am, at my core, a deeply compassionate person and cannot help but put myself in other people's shoes and feel empathy for them. Someone has to take the high road here and try to do the right thing, and after 32 years of knowing his family, you can bet it won't be any of them. Somehow, it just feels better doing the right thing, even when so many others are doing the wrong things. I gotta be me.

But, the important part is, we made it through this. I pray the pathology comes out OK and we don't have to do a round 2 of surgery. My guy is off work for 2 weeks now, though you're never off with your own business. He has estimates and phone calls to do, etc. But, I will force him to get some R & R and a 6 day trip to Cape May starting next Sunday will be just what the doctor ordered. It was the right thing to get this done before our trip and get it off our minds. We were convinced this was gonna be thyroid cancer, so, hopefully it's not and we can enjoy our trip more without the surgery hanging over our heads.

So, that's the scoop. Moving onward!!

Thanks for the support.

Onto summer 2017!!!