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!!!

Getting down to the wire

In two days, Tim has his surgery. We met with the surgeon for one last test on Monday. I really like him. He is so calm and confident, just what you want in a surgeon, any doctor really. He makes sure we have all our questions answered and, as we left, he said, “don’t worry, I’m going to take good care of you.”  Tim seems pretty calm. I know he will be nervous on Friday, but, he’s talked to quite a few people who’ve had this done and he feels pretty confident. Sadly, he also feels pretty confident that this is thyroid cancer. It’s strange living in our world. MM is such a main focus and such a formidable opponent that things like this get pushed down the scale of impact/importance. If we were not already living in the cancer world for over 10 years, this thing with his thyroid might be awful to us. Now, granted, we are not thrilled here, but, everything gets measured against the MM ruler and most things fall short of topping that. Hopefully, this will be taken care of and we won’t have to deal with it again.

We have a very small support system in place. My youngest sister will be with us in the hospital and my older sister changed her flights home from a business trip and will be watching the younger one’s two kids at a nearby hotel and then they will switch off later with my one sis staying overnight at the hotel with her kiddos to avoid a miserable drive home on Friday night and my older one set to stay at our house with Liv if Tim needs to stay overnight instead of getting out the same day. I plan to stay with him overnight in that case. Liv is old enough to stay alone, but, I just didn’t want her to on a night when her dad and mom are in a hospital. She is going to work that day. I gave her a choice but she feels she’d rather be distracted at work instead of sitting in a hospital all nervous and I am glad she chose that. I will call her as soon as he’s out of surgery.

There were a few comments to my last post about Tim’s family. Similar to what is seen on the MM facebook sites, there is never a shortage of people who found out their friends and family would not be there for them when the chips were down. It’s so hard to deal with such huge disappointments in life. My past is full of them. And, sadly, they don’t seem to stop. It’s better now though, because I have been very choosy about who I let into my inner circle.

I recently read a story that really taught me something. I’ve always said, “actions speak louder than words” and if you really want to see who someone is, watch what they do, not what they say. It’s just so true. I’ve been bamboozled by some really talented liars and self-promoters. Their actions eventually told the real story. But here’s what this story said; pay close attention to what people DON’T say and do. Many times, therein lies the answer you’re looking for.

I can’t recall if this was written by an attorney or a policeman, but he had been taught by an investigator to listen to what’s not said. He told of a case he was involved in where a man was being tried for murdering a woman but her body had not been found. His defense attorney, in his closing argument, was trying to convince the jurors that they had to have reasonable doubt in their minds that this woman could still be alive and if they did, they could not possibly convict the man. He said to them that in 10 minutes, she was going to walk through that door. When the jurors watched the door, he said he proved his point. If they were so sure she was dead, they would not have thought there was a chance she would come through the door. It was a pretty convincing ploy. When the jury came back after deciding the fate of this man, the verdict was guilty. It turns out, there was one juror who didn’t watch the door, he watched the defendant, who never once even glanced at the door, but stared at his hands on the desk in front of him, or something to that effect. That juror realized that that man knew she was dead and not coming through that door.

So, in addition to watching people’s actions, I am also going to take note of their inactions more than I used to. This story made me realize that there were times I did not pay enough attention to the things people didn’t say. Even when their lack of saying things sent up a red flag with me, I did not give it the importance I should have. I suppose silence actually can speak volumes.

Will be back here with an update after Tim’s surgery. Wish us luck!!!

Life’s too short

However, this post is not, so, my apologies for the novel I’m about to write.

Any of you who’ve been following my blog for any length of time know that we are pretty much estranged from Tim’s family, for good reason, I might add. We do not talk to his brother and his wife at all. His wife is at the bottom of a lot of what tore this family apart and his brother did nothing to stop her. Then again, he is no prize himself and is just as much to blame for a lot of it too. We are civil to his sister and her husband but rarely see or talk to them. His sister is a pathological liar who played a big role in all this too. Tim talks to his parents to update them after doctor visits and on birthdays and such. I maintain civility with them really only for his sake and Olivia’s. I put on a good act despite how hard it is. I am VERY angry at these people. Besides what they’ve done to me, they screwed over my husband and my kid. We do not spend holidays with any of them anymore, or go on vacations to his parents’ Vermont house anymore. We are out of his family. On the rare occasions we see the nieces and nephews, we are fine with them. They didn’t cause this mess.

Before I go on, I want to say, if you know someone who is estranged from family, PLEASE, please do not throw the “guilt grenade” in their lap by saying, “life’s too short” implying that they should get over it and mend fences ’cause what if someone dies, or whatever. You just can’t know all that has happened. I can tell you, from experience, that these comments are hurtful and it’s just wrong to put the onus on the victims of things you cannot possibly know. Trust me, I can tell people just one story about what’s been done to us by the people in Tim’s family and they change their tune really quickly then. Usually their mouths are hanging open in shock, and forget getting into the things Tim dealt with as a child. And you do not need to tell us, people whose lives were invaded by myeloma in their early 40’s, that life is too short. WE KNOW.

So, let me set the stage here, as briefly as I can, because it’s still hard to get the whole idea without ALL the backround. 10 years ago, Tim was diagnosed with MM in March. His parents went to their VT house in May, as usual, and they generally stayed until September or October. My family was all we had to rely on whilst we went through this nightmare. Our daughter had to be babysat every time Tim had an appointment. He was getting ready for an auto transplant and my mom was driving back and forth, 45 minutes each way, to watch her for all his appointments and tests. Tim’s parents live only 3 miles from us. When he was going to have his hickman catheter placed, under anesthesia, and 4 days of super high dose chemo to start mobilizing his stem cells, his mother said they would come home to be there for that and help out with Olivia. Well, they changed their minds, never told us either, just never showed up. It wound up being the week his brother and sister’s families were going up there for vacation, but, it’s not like this was the first time that ever happened, and, at the very least, they could have called and asked if we needed them or told us they weren’t coming. They just never showed up and we had to rely on my family again and Tim and I went to the hospital alone. He was in so much pain after the procedure and I didn’t even have anyone to sit with him while I got the car. Here we were walking through the parking garage, him miserable and spaced out on pain meds and not one person in his family was within 350 miles of us. My husband felt embarrassed that his family was doing nothing and my family had to keep helping out. What choice did we have? People who found out he’d been diagnosed with cancer sometimes said to him, “oh, I’m sure your family is doing a lot to help out” and he would just kind of let that pass without commenting because, no, they weren’t. They weren’t helping at all.

Now, there is an awful lot that went on in between, including a fight in Oct. of 2011 that ended our relationship with his family as we’d known it, but, here we are, 10 years later, and Tim needs to have thyroid surgery in a few weeks. His mother knew he had an appointment with a surgeon to get the final word on that but went weeks without even calling to see how it went. Tim was thinking about not even telling them about the surgery. Just how many times are his parents going to treat him like he doesn’t matter? Now, in the past, when Tim’s sister had DCIS and had a breast removed, his parents were there for everything. And, 8 years ago, when his brother had his thyroid removed, they stayed home from VT to be there. Frankly, I think we both were a little afraid of what they would decide to do now. It was like bracing for another slap in the face. A few days ago, Tim decided to do the right thing and so he called to tell his parents about the surgery. If we kept it from them, obviously it would create more hard feelings as they would know we did it on purpose. His mother was noncommittal when he told her. They were leaving for VT 2 days later. The next day, Tim called her from his cell on the way home from his oncology visit to update her on the results of his last cycle. She then told him, after discussing it with his father since the phone call the previous day, that they would keep in touch with me via phone the day of his surgery, meaning, they aren’t going to bother coming home to be there for him. I am stunned. These people who claim to be so upset over the estrangement from Tim, don’t care to even be here while he has surgery. So, after a day of talking this out with him, my sister, and a buddy, here is my take: 1. his parents always bring stress and aggravation to any situation they are involved in, so, I think Tim and I are both better off not having them there and 2. we did not need more proof that we did the right thing by getting these selfish, toxic people out of our lives, we’ve had tons of instances to prove that, but this is one more reason why there is no going back and we will not have these awful people in our inner circle ever again. It saddens me, Tim is a wonderful person, a good son and brother. He deserved better than the jerks he was dealt for family members This is just one more time his family has proven to us that, unless we played the game by their rules, which was putting up with the lies, backstabbing, name-calling, disrespect, bullying, fighting, etc. we were not part of their family.
We had enough respect for ourselves to know we deserved better and got out. Oh, and as is par for the course with people like this, they took no responsibility for anything they did to us and blame us for the rift now. In their small minds, and I’ve had this said right to me, “you take this, because it’s family.” Well, to me, that’s not family at all and we were sick and tired of taking it.

So, for those of you who think foolish pride is always behind family spats, you’re wrong. This was not pride that made us separate ourselves from them. This was a quality of life issue. This was to protect our daughter from nastiness and behaviors that were harmful and traumatizing for her to witness. This was after years and years of watching members of his family ruin important milestones in our lives, as well as holidays and vacations. This was 3 people who were living a nightmare called myeloma, and who then saw their own family members add to the crippling grief they were already experiencing with more grief, heartache, and aggravation. Life is too short is right. But for us, that meant that when 2 specialists tell you that you have a very limited amount of holidays, vacations, and milestones left together, you realize that you can no longer tolerate them being ruined by some world class jerks when you’re trying to make family memories for your child. Life is too short to spend it with people who make you miserable and ruin those life minutes for you.

This weekend, I explained to our daughter this latest event with her grandparents. I do not keep her from having a relationship with them and always stress that none of this has anything to do with her. But, she is 19 and she was going to notice that they aren’t there in a few weeks and I want Tim to feel all the support he can get from the few of us that are here for him. I told her, for the umpteenth time, don’t make the same mistake I made so many times in my life. When someone shows you they are not your friend, move on. I spent years being a great friend to several people, Tim’s sister in law was one of them, who were not true friends to me. When my life got difficult, they were gone. Giving the benefit of the doubt too many times translates into you getting screwed by the same people over and over. People show you who they are quite effectively. I wish I had enough self respect then to kick these people to the curb and use that time to foster friendships with people who knew how to be a friend back. I’ve said it many times, this is a lesson I so wish I’d learned many years earlier. I will not make the mistake of giving these jerks in Tim’s family any more chances. They’ve blown them all. If you’ve got true friends in your life, or a family that is there for you through thick and thin, be grateful. Nobody gets through this kind of thing alone. And, if you’ve got people in your life making you miserable, think about rectifying that, and if you already have, do NOT feel guilty. Do not wear the shame that belongs to others. It’s theirs to own, whether they admit it or not.

Life has a way of piling on you. Fate, health issues, and toxic people keep adding to that pile and smothering the joy out of you. You owe it to yourself to be in your own corner and not jump right on top of the pile too. Get out from under it and leave it behind, the things you can anyway.

Nowhere to go but forward.

STRESS……..what stress?!!!

Well, it’s always difficult to know where to start when it comes to explaining what’s going on in our lives here. So, I will jump in and just start somewhere. We met with the ENT surgeon on Monday, 5/15 to discuss the nodules on Tim’s thyroid that were found incidentally on his PET CT back in Feb. Tim wound up needing an ultrasound and then a needle biopsy. Now, it was a consult with the surgeon due to that biopsy outcome.As he is reading Tim’s records, I hear him say that his biopsy and then the advanced molecular testing done on the cells were both positive. I was like, “WHOA, back up a second. What do you mean by “positive?” Well, it turns out that Tim’s MM specialist was trying to…………..well, I suppose I don’t know exactly what she was trying to do, stay positive, I guess, not be the bearer of bad news that was not completely confirmed, maybe, but, this guy proceeds to tell us that Tim’s testing revealed he probably has thyroid cancer. If not, he has something that is quite like it and still requires removal of the thyroid. TERRIFIC. This news hit us right between the eyeballs. I had specifically asked his MM doc if any of these tests are indicative of cancer and she said NO, that all they showed was a pre-cancerous condition with high likelihood to become cancer later. (Insert loud, game-show-style wrong answer buzzer here)  I felt so bad for Tim. I already knew that this was bothering him, having to deal with something else on top of trying to adapt to life back on treatment. The doc felt bad. Tim said, “don’t worry, this isn’t our first, ‘you’ve got cancer’ talk.” I chimed in, “yeah, been there, done that.” We moved on. So, On June 23rd, he will have surgery. Doc plans to remove only half the thyroid and do a frozen section screening while Tim is still under anesthesia. He plans on leaving the other side, despite a small nodule already being there, if the screening does not show cancer, because 70% of people don’t even need synthetic thyroid supplementation if they retain half of the gland. If the cells do show cancer, he will remove the rest. Unfortunately, even if the frozen section is negative and they leave the right side, the pathology on what they removed could still come back a week later and show cancer cells and Tim will have to go for round 2 of this surgery, and, even if not, will need follow-up on this right-side nodule forever. Yippee-kay-yay. I almost feel like, just take the whole thing out, give him the pills and let’s be done with it.

The truth is, I have not even cried about this. I suppose there are a few reasons. Firstly, over the last 10 years, I have had to be SO strong, SO many times, I do not cry easily anymore. I seem to have learned to shut down my emotions when I have to be sharp and am needed. One of the results of that is that the emotions do come and hit me at other, unexpected times, I suppose when my guard is down. The other thing is that, in the whole picture, as bad as this is and, obviously, it would throw most people into complete crisis mode, this is not the biggest threat to us right now. Hopefully, if all goes well, this will be removed and, even if it is cancer, he will be cured of it and just take his Synthroid pills every day. If only all cancer stories ended that way. I have to be strong for Tim too. He’s fed up lately, with dealing with MM, dealing with work. He’s just had it. Truth be told, I’ve had it all too and am not feeling especially strong and sunshiney. But, I have to buck up for him and forge ahead. I can’t make him worried about me or feel like he can’t confide in me.

So, what else? The first few weeks of Liv being home were stressful. Firstly, she doesn’t know he’s back on treatment so it’s hard keeping that secret. Then, I told her about the thyroid to explain all these appointments we’re going to, but, she doesn’t know the latest that was told to us. Also, she was being lackadaisical about finding a job, which was ticking us off big time. Thankfully, she just found one, waitressing of all things, something I talked to her about several times, and we know a local restaurant owner that would hire her, two actually, and she always declined. She just started working at this little cafĂ© over the NY border that she goes to sometimes with her friends. She is making twice what her friends are making and seems to like it OK, so far. I am grateful for that. We needed some good news.

BUT, this came on the heels of some pretty bad news that had Tim and I sounding off at her something bad. Just a few days after this appointment where we heard the dreaded “C word” again, I found out that I read the wrong line on her final college grades report. I read the cumulative GPA line instead of the current semester GPA. AND, LO AND BEHOLD, all that sorority nonsense and staying out at parties until the wee hours and such dropped her GPA an entire point, from 3.8 the first semester to 2.86 the second. She did not make the freshman honor society for the 2nd semester, nor the Dean’s list, AND, HERE’S THE KICKER: Her 15 thousand dollar per year scholarship requires a 3.0 GPA. Now, the kid made it this year because they go by the cumulative but we read her the riot act for doing exactly what we told her not to do, which was putting her social life ahead of her schoolwork. She has been warned. We will not, WE CAN NOT keep her in that school without her scholarship. She has one semester to prove that she can get her priorities straight or we are pulling the plug on her dream school and she’s gonna get a dose of tough love that will not be forgotten soon or ever. We needed this like we needed a hole in the head right now. We were furious. It’s not her brain. The kid is smart. It’s that she’s not driven or interested in academics. I get that. I was very much like that myself at her age. but, this is the difference, I did not have my parents paying 30 grand a year on college. She does.

SO, here we are still wondering if we did the right thing by sending her to the school of her choice instead of one of the other more affordable options we had, and this was the thanks we got. In her defense, she does not know what we are currently dealing with here so she cannot be blamed for that part of it, BUT, she is to blame for doing what she did, which is exactly what we warned her, begged her not to do to us. She did not hold up her end of the bargain and she will not do this to us and get away with it. I know many people who did not rein their kids in and wound up paying for 5-6 years for them to get a 4-year degree. That won’t happen here. She will fly right or find herself back home, commuting to a local college, at a much lower cost to us. Period.

So, as for me, well, all my medical issues are flared up. Stress will do that to ya. Asthma, IBS through the roof. I am tired all the time. I try to pick myself up by the boot straps but it’s hard. Very few good things going on to outweigh the bad things. Life is out of balance and has been for WAY too long. All work and worry, no play makes for a stressed and bummed out girl. I feel like every time I put out one fire, several more pop up.

I think I need a bigger hose.

College

Well another milestone is about to be achieved. A month from today is our daughter’s last day of her freshman year of college and we will be moving her back home. where she belongs. It has been an interesting year. On the one hand, it did go very quickly. I thought it would feel as if it was dragging on forever with me missing her so. It didn’t. She has done well, grades-wise; made the Dean’s list and a freshmen honor society that requires a GPA of 3.5 or above. The kid’s brain works just fine.

From a social point of view, after a disastrous first week when she realized that she and her roommate were not going to be a great pairing like her friends got with their roommates and her mom was right that there would be a lot of rich, snobby girls at a private school, she started to find friends. Today, she is quite the social butterfly, with lots of friends and several boys who apparently have made it very clear they want to date her. She seems to be holding back from that. Not sure why, but, she invited one of them to her sorority’s social in 2 weeks and one of the others invited her to his frat’s social this coming weekend. We will see if anything develops from those situations. I think she realizes it would be a LONG summer if she starts dating one of these guys and then hardly/never sees them for 4 months. We shall see. Yesterday, she got her room assignment for next year. She chose to room with one of her close friends and 3 pairs of girlfriends all got rooms right next to each other so she is excited about that. I’m at least grateful that this year’s roommate was not a jerk. She is a sweet girl, just painfully shy and insecure. It could have been far worse.

As with all situations, you have the good, the bad, and the ugly. Luckily, there’s been a lot of good and it sure helps as a parent to deal with the missing them and worries when you see your kid so darn happy, and growing up and learning to be responsible for themself…….kinda. She loves her school, loves being by the beach, and loves her friends and life there. As for the bad, well, I really thought you would not find bad teachers who don’t do their jobs at the college level, but, you do. Her 1st semester English teacher was awful and I was so close to calling the college and complaining. That’s really disappointing. And the cost, well, that is quickly turning what little of my hair that’s not gray, gray. I am really sweating pulling this off for another 3 years. And the ugly, well, 2 lockdowns and 2 evacuations were not fun to deal with. I probably wrote about it on here, but her college made the news on Nov. 1, when one of the football players put a stocking mask on his face and held up 2 girls on campus for their cell phones. We were on the phone with Liv while she hid in her room and then heard shouting in the halls that he was in their dorm. There have been several times in her life that I wanted to trade places with her to protect her from having to deal with something so hard and scary. This was certainly one of them. This was an awful experience. It turned out to be a guy in her dorm, on her floor, and right across the hall from a room she had been hanging out with friends in a LOT. We found out later that it was a fake gun, but that didn’t change what we’d already gone through. This ordeal put me in a funk for quite some time. She had 3 times when she thought her life was in jeopardy in just under 2 months of being there. It was a RUDE awakening for all three of us. Another part of all this that is good, bad, and ugly all at once is her joining her sorority. If I had known more about Greek life, I probably would have forbidden it, and seeing on my Life 360 app, that a girl in her sorority drove up to 89 and 92 miles an hour with my kid in the car on an overnight trip had me blowing my stack and threatening Liv that she was not going back to that school next year, after showing that she did not have the guts/sense to tell the girl to slow down. This was another episode that put me in a funk, one that I have not recovered from. Some of these kids are awful drivers. Tim and I have almost been hit about 4 or 5 times just in the freaking parking lot by these morons. They blow through stop signs, drive through lane intersections without stopping because they see a parking spot they want, cut corners and come into your lane. And my kid is driving all over with a whole bunch of kids and uber drivers all the time. UGH, I hate it.

As I said to my therapist, I feel so uninsulated from bad things happening in my life. I really feel as if one more thing is gonna put me over the edge. She may actually go to three Greek life socials in the next few weeks and 2 of them are in Atlantic City. I am petrified of the driving thing.

It’s so hard being a parent. It’s infinitely harder doing it whilst on the MM roller coaster. Oh, speaking of MM, here’s a twist. My current tenant in my 2 family just broke her lease to move in with her boyfriend. JERK. I just re-rented it to a woman who is quite chatty and private messaged me on Facebook asking for the name of a mover I mentioned to her last week. We got to “talking” and it turns out, her uncle died of MM 13 years ago. I did not tell her about Tim, but I was amazed. I told her I ran a support group for it and have a relative with it. I used to be open with our tenants about it. I’m not anymore. So crazy though. She seems like a really nice woman. She is divorcing a controlling man and looking forward to getting her life back. Lucky for her, he’s rich, so she at least got that, and 2 really cute kids outta the deal.

So, moving on, as usual. One day at a time. Life is hard, and complicated, with moments of greatness mixed in.

Happy spring!!!

10 years

Well, folks, we’ve hit double digits. Today marks 10 years since the day we found out Tim has multiple myeloma. This was not a day either of us thought we would see. We are grateful, make no mistake. To see Olivia grow up, well, it’s nothing short of a blessing and a miracle, considering how things looked on this date, 10 years ago. It is impossible to explain any of this to a person who is not dealing with cancer, or another deadly illness. For those of you who do deal with it, you know. There was no exhaling or relaxing in those 10 years. We did not know we had ANY of that time, let alone 10 years of it. We lived our lives in month-long increments, later it was 2 or 3 month increments, but, even then, we were always on guard. Not having an appointment for 3 months does not mean something can’t happen in between, and, at times, it did. Tim has been hospitalized 4 times since his diagnosis. Strep sepsis in the beginning, which led to his dx. Another infection a few weeks later, that I know was caused by the first hospitalization. He had disseminated shingles about 4 years ago, and pneumonia in Nov. of 2015. He had pneumonia at Christmas of 2010 too but was not hospitalized. All of those hospitalizations were hell-ish, for varying reasons. Being in the hospital just SUCKS. He’s also had a handful of other trips to the ER.

It’s a strange thing, being grateful whilst in the midst of this nightmare. The only reason you can be at all is because everything is relative. First and foremost, I know lovely people who did not get 10 years, so you must recognize that and feel blessed somehow. I have also recently heard of 2 beautiful young children, one living in my neighborhood, who were diagnosed with aggressive, high risk forms of leukemia. Despite being able to easily recall the hell we lived in for those first 2 years of ’07 and ’08, it does not compare to what these families are going through now. But, and there is always a “but”, the fact is, compared to what most people are dealing with, our life is still a nightmare. There are times it’s very hard to be grateful for this hand that we’ve been dealt. It’s still unfair. I still feel cheated out of a “normal” life, for Tim and Olivia, and for myself. Some days, I am still angry over this burden we were saddled with.

Today, ten years later, our daughter is in college. I am grateful that we all made it through her high school years and I did not have to raise her alone. Liv LOVES her school and has made many friends, but, it has not been without its stressors for all three of us. There have been lockdowns and other stressful situations she has been, and still is, involved in. And, we don’t know, now that Tim is back on treatment, how long he will be able to work and hang onto his business. If the college does not give us some financial help if he has to stop working, it’s not affordable for us. It’s hard for me not to worry about what the future holds.

So, now, we are not living in 3 month increments, or 2 months, or even 1 month. He is at the cancer center every week, for treatment or a blood draw. We live in week-long segments now, and struggle to take things one day at a time to make it the most manageable. The pressure is back on me full force, to be on guard and watch him for symptoms. What’s “normal” and what’s not and demands a call to the doctor. So hard to feel so responsible for someone’s life when you’re not a medical professional. One screw up and the results could be catastrophic.

But, we move on. What else can we do? We find out this Friday if the first month’s treatment worked. I sure pray it did. It was hard enough for him to work on certain days while dealing with the side effects, I can’t imagine adding more to them with more drugs. My own health has been acting up. TMJ seems to be back. I’m exhausted all the time. I think it’s all stress related. The other day, I thought, “these last few months have been stressful, wait, then there was “that.”. Well, this last year then. But, then there was THAT. OK the last few years. But, oh yeah, then there was THAT. And I can keep going back, and back some more. Truthfully, my life has had very few intervals that were not impacted very badly by health issues and high stress levels. And oh yeah, then there was THAT. I have a sister that made my life a living hell for some time in our teen years.

People say, “nobody said life was gonna be easy, or fair.” Well, truer words were never spoken. It isn’t either of those things. And I sure wish that more of my life had been spent really LIVING instead of just coping. The overwhelming majority of it was spent dealing with very difficult things and trying to make it through them.

This weekend, Tim and I are taking our dog and going to Cape May for a few days and picking Liv up from a friend’s house on the way back for the rest of her spring break. We’re going to try to do some LIVING. I suppose a lot of that being successful depends on the news we get the day before we leave, so, praying hard that it’s good news.

TO LIFE!!!

Back in the saddle again

So, Friday was it, Tim’s first treatment since May 9th of 2008. Tim’s Pet CT showed that there were a few tiny areas where the MM was beginning to be active in his bones, so, it was the right choice not to delay treatment any further. Actually, his main doctor thought he should have started a few months ago, but the other one convinced her to hold off. Women are always right……..just sayin’. ;o) He got a Velcade shot in his tummy and 40 mg of Dex. It only took 22 hours from then to have our first dex-fueled argument. Joy, happy joy. AND, it was over me passing on a suggestion that someone else gave me about what she drinks that helps her with her treatments. I barely had the words out of my mouth and he snapped, “don’t buy it. I”m not gonna like it.” He can be rude sometimes with cutting me off, thinking he knows what I’m about to say and shooting down what he thinks that was. It gets old, quick. SO, this saying he doesn’t even want to try something and biting my head off about it started an argument and I warned him that, Dex or no Dex, I’m not gonna put up with being treated like crap. Here I am trying to prepare for this new life on treatment and going out buying vitamins and massage lotions to try to make sure he doesn’t get neuropathy, and he snaps at me like that. I see that maybe he is struggling with the loss of control over his life, and he reminded me that IT’S HIS LIFE, but, if he wakes up screaming with pain from neuropathy, it’s not like me or Liv, if she happens to be home at the time, are going to be unscathed by that. His life directly affects mine and hers. If he gets bad neuropathy, there will be no working in his field again. His is NOT a desk job. Our kid will most likely have to leave the college she now loves. We might even lose our home and have to move into our 2-family.

SIGH  So, how do you back off and do nothing when you know there might be a heavy price to pay for that? Darned if I know. But, I guess I will have to choose my battles here. Do something but try not overwhelm him with feeling like he is a patient and I am a caregiver again.

As always, I have to try, try, and try some more to live one day at a time. It’s too overwhelming to try to figure out too much at once. I am just praying that 1. this treatment works WELL and 2. he doesn’t get neuropathy or other side effects that force him to lower doses or change meds.

For now, I will get to today’s list and try not to worry about tomorrow’s list and worries.

GILT. spelled wrong on purpose because it should be a four-letter word

So, I have mentioned before how hard it is to get angry at my husband, even when it is deserved, and then feel guilty afterward because he has cancer. Well, the same goes for my kid. It is a hard row to hoe to raise a child that was dealt this awful hand of having a dad with cancer. I feel so sorry for her all the time. She did not get through her childhood without her world being turned upside down. But, the world still is a hard place and she is not going to get a free pass from everyone because her dad has cancer. And, I don’t want to raise her to be a victim, always feeling sorry for herself or expecting a break all the time. I can’t. That does not empower her as a person. Last week, she “rushed” to join a sorority that she wanted very badly to get into. During this time, she missed 2 days of classes because her stomach was upset. We’re pretty sure the first time was something she ate and the second time might have been nerves. It was the final day when she was to find out if she made it. She did. She was/is very happy, except for the fact that her closest friends did not make it in.

Some backround on what’s been going on with her in college: she has made a lot of friends and is out at parties every weekend and even some weeknights too. She is happy and having a blast. She made the dean’s list with a 3.8 gpa, but, these are all gen ed. classes and she’s not being challenged much. That’s great, it was her first semester so I’m glad she was not overwhelmed, but, we have warned her that she is not getting enough sleep. She thinks it’s funny, that this is what you do when you’re a college kid. She spent much of her 1st semester unable to shake a cold. She doesn’t get home from these parties until 2 am and doesn’t necessarily go to bed even then. There are times she’s hanging with friends until 4 am. Well, we went down to see her for Tim’s birthday, basically said that, OK it’s back to business now, rushing is over, etc. and what does she do? sleeps through her first class Monday. Actually got up and made it to a teacher conference and then was so tired when she got back to her dorm, she zonked out thru her next class. I read her the riot act. While Tim and I are stressing over how we are going to afford 4 years of that school, and warning her over and over that her schoolwork comes first, and that we expect her to start looking for a summer job, she is just living la vida loca. I told her that if she doesn’t rein it in, she can forget being part of this sorority (which I just found out is going to cost $700 to join) I also told her that this had better NOT ever happen again and that she is to march right down to her advisor and declare her major, as I’ve been bugging her to do for weeks. I’m so done with her lackadaisical attitude. I’m really afraid when she starts getting into her major classes, she’s in for a rude awakening at how much harder they will be and if she doesn’t maintain a 3.0 gpa, she loses her scholarship and we can’t afford the school without it.

Then, the guilt set in. I spent all this morning feeling bad. And I shouldn’t. She deserved to get “what for” for this. I am sick and tired of people not listening to me and then I get to pay the price for their bad decisions. This is MY money, dammit. So, in a weak moment last week after she got into the sorority, I was gonna pay the fee. I hadn’t told her yet, and now I’ve changed my mind. Told her this morning that it was coming out of her money. This is a social thing, has nothing to do with her earning a degree. If she wants it, she can pay for it. I also told her that she’d better shape up, that it’s not fair that her father and I are stressed out over affording this school and she’s putting her social life before her homework and studies. I can’t back down. This is a serious financial hardship for us and she has got to start taking that seriously. And if she doesn’t, well, then I’m going to put more and more of her “skin in the game.” I already took out the government deferred loans in her name when she whined and complained about applying for outside scholarships and didn’t get a single one. I told her I am not paying for any sorority costs at all. And, if she keeps it up, I will take out more school loans and forget paying for this ourselves. She can graduate with 120K in debts. I told her this morning that she had better start holding up her end of the deal.

Tim starting chemo on Friday and our tenant informing us the other day that she might be breaking our lease doesn’t help matters. I am trying to be sure that I am not taking any of that out on her. I don’t think I am. After missing 5 classes just last week, this stunt she pulled yesterday just ain’t gonna fly. It threw me into a funk that I have not recovered from yet.

It’s tough to be a mom in this day and age. It’s just ridiculously hard to be a mom with a husband who has myeloma. I would really love to run away from all my responsibilities and party all the time. But, this whole thing comes unglued if I do that. Right now, I feel like I am on the verge of becoming unglued. It just keeps getting harder and harder to dust myself off and stand back up.

My sister sent me a long message in a card with a bracelet yesterday. I put it on as soon as I opened it. It says, “BREATHE.” Some days, I feel like that’s all I can manage.