November 1, 2025

Well, I'm checking in. For years, myeloma blogs were such a big part of my life and I "met" some awesome people. I find it helpful to write. I should do it more. It's cathartic and sometimes you figure things out when you take the time to write down your thoughts. So, an update. Tim is doing really well. He is over 18.5 years out from diagnosis. He is taking another chemo break, which is something we didn't think he was going to be able to do again. He was on Dara as a single agent, then Pomalyst was added every other day. But, he worries about the effects of the drugs on his body long term. I can't say I don't worry as well. So, he decided to give his body a rest. He has no m-spike and his markers all look fine. His doctor is being very cautious and will do bone marrow MRI's to make sure nothing sinister is happening despite the low markers. We have 5 myeloma specialists in our practice and I think they just hired a 6th. The younger doctors are not OK with chemo vacations. They don't like taking the risk of bone damage cropping up even when labs look good. I get it. It happens and the results can be very damaging to a patient's quality of life. But, Tim knows the risks and his disease does not behave the way myeloma usually does. He wants to take advantage of that. And, since I have respect for his right to call the shots, and I also know folks who died from years of taking chemo, I support his decision. It's nice to have a bit of normalcy in our lives and not make multiple trips to the cancer center every month. I just have to be careful to only book his appointments with his regular doctor or we will hear a lot of fire and brimstone from the others. They will never be on board with this decision. Our daughter found a new job since I last wrote. Thank goodness. The company she worked for before this was awful and she was so overworked and stressed out, it was getting us worried. She lost weight, had tension headaches. It was baaaad. Ironically, she now works for a company that does marketing for medical conferences and there's times when I know the myeloma doctors speaking because they are blood cancer conferences. She likes that she is somehow involved in helping the cause. Her roommates both moved in with their boyfriends so she had to move into her own place. Luckily she found a place just 2 blocks from the beach and we moved her in this past May. She's not crazy about living alone but I think she's getting used to it. She loves living by the ocean. We miss her but it's only 70 miles away so we do see her from time to time. We just went down with the dog, a week ago, and walked the beach and boardwalk with Liv. Asbury Park is the most dog friendly place I have ever seen. They're everywhere. And, thank goodness for facetime when you're empty nesting. It's so helpful when you're missing someone. She will be home for Thanksgiving and Christmas, which is great. We are fighting our dog's cancer again right now. She had surgery 2+ years ago and, sadly, it recurred. A soft tissue tumor in her leg. So she goes for surgery again on Friday. She will be our last dog. I will hate not having a dog in our home but the vet costs and the heartache when they get sick and die is just too much for me. I love this doggie so much. We are all gonna be distraught when she goes. I can't do it again. And she's soooooo good. We take her everywhere we go on vacation. She never messes indoors or barks or chews. I know we will never get a dog this good again and I don't want to be limited on going away because of a pet. It's not easy to find pet-friendly places last minute and we don't plan vacations very far in advance. It is coming up on 5 years since we lost my dad to cancer. I cannot believe it has been that long. It's scary how fast the time zooms by. My mom is doing OK in assisted living. Her short term memory is really bad but she's hanging in there. So, looming in the near future is having to decide what to do about Tim collecting social security. He becomes eligable for it in Feb. They say to collect early if you are sick. But, he still wants to work so we will be "docked" quite a bit of his benefits due to his income. I went to a free seminar at a local library last week but, it turns out the woman gave incorrect information about social security. I think her main goal was to find new customers to sell annuities to. She called me the other night, gave me even more incorrect info about SS and lost interest in me as soon as she realized I was not interested in buying annuities. I guess it's time to call Soc. Sec. directly. I have to figure this out. I'm always fearful I'm going to make a financial mistake that can't be fixed later. I've felt that way ever since Tim was diagnosed. It doesn't help that we have lost a fair bit of money because of things I didn't know. It sucks but there's no going back. Tim's body is not going to be able to keep doing what he does for much longer. He's always in pain, has arthritis, disc degeneration, some neck issues, and a torn meniscus now. The truth is, it would probably be better for us if he went out on permanent disability instead of retiring. He would get his full SS benefit, instead of 70%, get medicare sooner, and he isn't even supposed to be lifting heavy items with his MM. He lifts a machine that weighs over 250 pounds (with our employee). But, he is adamant about working as long as he can. He thinks he will worsen physically and mentally if he stops. I can't argue with him. It's his decision. I just hate worrying about money. We live in a high cost of living area. It's not going to be easy to retire here and he said he is NOT moving. One day at a time, Denise, one day at a time. But, you don't get to avoid planning ahead when it comes to finincial issues. We will have to make a decision soon. So, bring on fall and the holiday season. To anyone reading, wishing you health and happiness. Our holidays look very different these days but, it's OK. Even when it's just the 3 of us celebrating at home, I'm with my favorite people in the world and I feel blessed. Cheers!

17 years

Today, March 8th, 2024, is 17 years since we were told that Tim has myeloma. The gratefulness I feel is hard to put into words, partly because there are so many other emotions also tied to it. In 2007, especially after a failed autologous transplant in September, we didn't even dare to hope that Tim had a chance to live this long. From what we were told, we'd be lucky if he saw our then 8 year old reach her teen years. We were told that only with an allogeneic transplant would he have a chance to see her graduate high school, a treatment he took a pass on after a phone consult with Dr. Durie from the IMF. Guesses about his life span, that we NEVER asked for, ranged between 2 and 5 years. Sadly, there are myeloma patients that only see those time spans. My gratefulness over our good fortune is always tempered by remembering friends and aquaintances that were not as fortunate as we've been, some of which didn't make it to their kids' graduations. And when people hear about my husband's cancer, those who are not fighting a cancer battle themselves, they don't have a clue what these 17 years looked like for us. They only see it in a one dimensional way, that we are so lucky. And, we are. But, from a realistic standpoint, most people would not consider being diagnosed at 43 with an incurable disease, when you have an 8 year old daughter you want to raise, a lucky break. It's not. 2007 was the worst year of our lives. 2008 was brutal as well. And I know for sure that it was only the very long breaks in treatment that Tim was able to take that gave us a chance to get our feet back under us and the ability to exhale ever so slightly. We still lived month to month, or sometimes every 2 or 3 months, sweating out those lab reports or scans. The fear and sadness still hangs over us that anything can happen at any time and we are not able to plan things for the future with any sense of certainty that our little family will still be intact then. The covid pandemic made things even worse in that respect as we had to curb what little social life we had and Tim is really tired of feeling like he is not living what time he has left like he wants to. Ya see, the thing about people marveling over how long he has lived with myeloma is the very next thought that runs through his head every time they say that......how much longer can he possibly have? I think he has this number in his head, 20 years, thinking that making it past that is out of reach. And 3 years does not sound like very long with how fast the months fly by. While I know people who have lived with myeloma longer than that, I think just the shock people have that he's gone this long, some of them in the medical field, makes him think he's on borrowed time. It's a scary place to be, no doubt about it. He is starting to become somewhat famous in our myeloma department as other patients learn how long he's had this, with doctors sometimes warning them that his case is not the norm. One doctor told a new friend of mine, whose husband was diagnosed a few years ago, that Tim is an anomaly. One doctor told us he was a fluke. Comments are made that "you can't go by him." I dunno, there were no immunotherapies back in 2007. I think that with these modern treatments we have now, living this long will be much less of an anomaly for people diagnosed now. I believe Tim is enjoying the "fame" a little but, lately, I can tell he is also bummed to think that he will probably not be "allowed" to go off treatment ever again and that is a sobering thought for him. He developed a lesion on his sternum a few years ago, while off treatment, despite very low marker numbers so his doctor is not inclined to let him take any more extending drug holidays. These days, he is taking Darzalex shots once a month and his m-spike is tiny, .07 on his last lab report. His doctor let him drop the Dex because the side effects were lasting too long and making it hard for him to keep working and run his business. His quality of life is MUCH better without that awful stuff. After 4 years of distancing and masking, he finally caught covid in January, probably from his visit to the cancer center. They re-instated their mask mandate but are not enforcing it very well. Despite being masked indoors the few places he ever goes, it got him. It was a miracle I didn't catch it. We lived on separate floors for a few weeks. He recovered well, thankfully. Life is speeding by though and he's not happy with less vacations and outings. We stopped going to the beach in season and now go in the spring and/or fall and stay in private rentals instead of hotels when possible. He doesn't go to restaurants with his friends unless it's outdoors. He broke that rule last May to attend a friend's 60th birthday. He got sick and was sick for over a month, spreading it to Liv and myself as well. Speaking of last year, Liv moved out in June. Talk about conflicting emotions. Jeez, this sure triggered that. We are so proud of her. We are happy for her. She moved to an apt. 3 blocks from the Asbury Park boardwalk and beach. She has 2 roommates. She loves it. But, wow, do we miss her. Life is very different when someone who lived with you for 25 years moves out. She has not found a new job yet and her company still wants her coming into the office a day or 2 a week, so she started out staying here overnight once a week but now is down to just driving up for one day and going back the same day. We still get to see her, briefly, sometimes, so it has helped us as we adjust to being empty nesters. She's only 70 miles away so it's a doable trip for us to go visit her too. She had been living such a locked down life with us because of covid. Moving out gave her some normalcy back, though, that normalcy resulted in her getting covid 2 months after moving out. That damn virus is everywhere, especially if you live in an overpopulated state like New Jersey. So, this is what life looks like 17 years into this myeloma journey. We have been very fortunate, from the standpoint of a myeloma patient and caregiver. We are so grateful that we succeeded in raising our daughter together. That was the number one goal. We saw that high school graduation together, and the bachelors degree one, and the MBA graduation too. She's out of the nest and standing on our own 2 feet. It's a blessing and, in some ways, I think it's been a miracle. Life has not been easy for us these last 17 years but, like the old saying goes, it could have been worse.....much worse. We have reached a lot of milestones, not the least of which was Tim turning 60 last month. We have made a lot of memories. We've gotten some vacations and adventures in. In the end, all we can do in this life is make the best of things. I credit Tim with having the courage and mental strength he's had to refuse to let myeloma define him and rob him of whatever time he has left. He made this promise to himself 17 years ago and he made good on it. He amazes me every single day. Cheers to spring and 2024! Be well!

WE'RE HERE !!!!! 2023

I have neglected this blog for 3 years. Truth be told, it was not only neglect, it was that they changed the sign in process and, for some reason, (like I don't know it was because I am so technically challenged) I was unable to get signed in and publish a new post. Today, I just gave it a whirl and, lo and behold, I got in. I used to cringe whenever bloggers went silent and worry that something happened to them. So, if I have any readers around that were tuning in back then, I apologize for that. I was in a very bad place when I last posted. The pandemic had just got into full swing and my Dad had taken a turn for the worse. I had to move my parents out of their condo into assisted living and then clean out their condo and 3 large storage units. I am sad to report, I did lose my father on November 6, 2020. He had lung cancer and then bladder cancer decided to chime in too. There were a lot of very painful things that happened in 2020. It was a year I won't ever forget but I wish I could. On a brighter note, my mother is doing better than we all expected, after losing the man she met when she was 15. Her short term memory is shot but she is still functioning pretty well in her assisted living, just 4.5 miles from my home. It was VERY hard when the place was locked down due to covid, and we could not even visit her in the beginnning of her grief journey, but, we are gladly past those awful days, I hope, for good. She has made friends and feels safe there. As far as Tim's health goes, he went back on treatment in 2021, after a 3.5 year break. Yes, we consider ourselves VERY blessed. To get these kind of drug holidays is not common for myeloma patients. He went on Darxalex, Velcade, and Dex. Things were OK for a bit, but, about 6 weeks into it, he started having major GI issues, which included 4 hour bouts of vomiting about 30 hours after he'd get the belly shots. We dropped the Velcade and it stopped. It seems he does OK on either Dara or Velcade, but, doing them together was too much. Then, in November of '21, he once again decided he wanted to feel good for the holidays and stopped all treatment. He was blessed with another year and a half off meds. He just went back on 10 days ago and I can't say it went well. This time they tried Dara/Rev/Dex. He has not been on Revlimid since induction 16 years ago. I remember the fatigue, chemo brain, loss of taste. Well, this time it caused a burning rash on his torso and unrelenting fevers. He was taken off after day 6, put on Levaquin, but the fevers persisted for several more days. They seem to have stopped but he's still getting bad night sweats and has to start a prednisone taper today for the rash because Claritin wasn't cutting it. His doctor seems to think he can still do Revlimid with supportive meds. Tim thinks NOT. It's always a worry about how much longer he can continue his business if he has to be on treatment. You cannot refinish folks' hardwood floors remotely, from a laptop. The other big news around her is our daughter is moving out. I am proud, excited for her, and devastated all at once. She graduated college in 2020, though she missed the last 2 months of her senior year when we had to move her home in March instead of May. Due to the pandemic and not being able to go out and get a job, thereby risking all of our lives, she went ahead and got her masters degree and finished that up in May of 2021. She is working for a marketing company but has always wanted to move to the JERSEY SHORE, near where she went to college. We thought we'd have her home about another year or two but an opportunity arose with a former college roommate and, since she doesn not want to live alone, it seemed like it might be the only opporunity she might get. SOOOOOO, she's moving to Asbury Park June 1st. I am not looking forward to being an empty nester, but, they don't stay babies forever. I will just have to get used to it. And, just like I did when she was in college, I comfort myself by remembering she's only 70 or so miles away and not in another state or country. As for me, not much has changed. I'm a bit older, heavier, and I think the gray hairs outnumber the brown now. I still do a terrible job taking care of myself and it shows. As a caregiver, you get so used to putting others first. It becomes a very hard habit to break. I'm trying to think of new hobbies I could take up after Liv moves out but, I am still masking indoors and nobody else is. I went to a myeloma summit in early March, because I thought most folks would be masked. Well, they weren't. 4 days later, I came down with the first cold I've had in over 3 years. So, I get pretty anxious going places indoors when nobody is masked. Pretty much everyone I know that eased up on their masking got covid, including both of my sisters, one of whom then got shingles as a parting gift. I have to think of some way to keep busy. Drowning in paperwork makes Denise a dull girl. I guess I will sign off for now. I sure hope this wasn't just a fluke and I can figure out how to get on here again. Summer's coming! I hope it's a good one!

Easter 2020

I'm finding it hard to know how I am supposed to feel today. Normally, this is a day of celebration. That doesn't feel right or possible today. Another myeloma friend, and I hate even saying it like that because myeloma should not define anyone, but Mike died the other day at 46 years old. Like Adina, he left a spouse and 2 teenage daughters. Corona virus took him from his family and this world. He was one of the sweetest, kindest men I have ever met. He deserved so much better, as did his family. There are others I know who are currently fighting this damn virus. My husband has 4 family members, 2 that are in the hospital now, one in very bad shape, and his sister and brother in law are recovering. We live in a "hotspot" of the disease, right across the river from NYC. In addition to all this, I spent the month of March in another life and death struggle with my dad and had to move my parents into an assisted living facility at the very worst time to do that. I put my family's health, and lives, at risk in order to take care of him in the hospital and move them. As if that wasn't bad enough, I have 2 sisters, who do not handle stress well, lash out at me in the middle of all this at a time when that was the last thing I or my family needed. Life looks very different right now from what it did just 6 weeks ago. Unimaginably different, when you consider everything that is going on.

I do not feel like celebrating. My family is fractured. People are sick and dying. Others are mourning the death of loved ones that took half their hearts with them when they left. Most everyone is living in fear right now of their own mortality and so many of the people I know have cancer so this virus is so much more risky for them. But, if there is one thing that I've learned in the 13+ years of living with the grief of my husband's MM diagnosis, it is this......being morose and depressed does not help any of those people. In fact, those people would probably be screaming at us to be grateful for what we DON'T have wrong in our lives on this day. I am, by no means, being dismissive of the feelings of people who are lonely and depressed in this lockdown, or those who mourn or are fighting for their lives. I am, instead, saying that we owe it to them to be grateful for what we have today. There is no damn sense in good people losing their lives in their 20's, 30's, 40's etc. But when we can't find sense, the only option left is to find meaning.

If you can breathe today without assistance, you are blessed. If you can get up and walk across your house or back yard, you are blessed. If you have someone to love that loves you, you are blessed. If you have food to eat and money to pay your bills, you are blessed. There are so many things that you might have going right in your life that others do not. We can pray for those people and we can help where we can. But, just like I don't think you honor a person who dies by spending the rest of your life mourning, I don't think we honor or help anyone by being so morose that we sit around catatonic about all that is wrong with the world.

So, today, I am going to concentrate of what is right with my life. And, I am going to try to push out the grief and fear as much as possible. I am going to try to find the flowers among the rubble. I am going to dwell on my family's blessings.

Happy Easter, Passover, and spring to y'all!!!

Adina

Yesterday, Adina died. She was only 45, diagnosed 5+ years ago. She leaves behind a great husband and 2 teenage daughters that need their mom. She fought like crazy to stay here. Her myeloma refused to allow that. Her story is a very difficult one. When she first fell ill, her doctor did not take her seriously. Sadly, this is very common, especially with women, and I've had this happen many times myself. Too many doctors try to blame stress or anxiety for women's ailments. Her doctor did not run blood tests or do any real testing, to my knowledge, to rule out illnesses. Finally, I cannot remember if she went to the hospital or her doctor, but she told whichever that she was dying and she was not leaving until they found out what was wrong with her. She was right. She was dying. She was in renal failure and had to start dialysis. She was then diagnosed with myeloma. She was, understandably so, furious at her doctor, who just said, "we don't expect to see myeloma in someone your age."

For the next 5+ years, Adina fought like hell to stay here for her family and try to keep their family's farm and finances solvent. But, like the truly amazing person she is, she also found a way to help others and make the world a better place. She started a myeloma support group in her area because there was none for folks like her and others fighting MM. With SO MUCH already on her plate, and while fighting for her own life, she found the time and energy to fill this need and give to others. That's how this beautiful woman rolled. She always tried to make the world a better place. She jumped in and did what she could.

On Feb 1st, she posted on Facebook that she was stopping treatment. She was out of viable options and the new treatment worked for a very short time and then stopped. She was tired of feeling so sick from the drugs, not getting much help from them, and being stuck in the hospital instead of spending time with her family. These are the final words of that post:

"I wish you all the best, please go out in the world and make a difference, be a good person, live a life worth living."

Adina did those things, but not nearly as long as she wanted and deserved to. If there is one thing I have seen, in the 13 years that I've been immersed in the world of myeloma, it's that myeloma seems to choose the best people, the most giving people. It's so damn unfair. Why can't it land on the selfish jerks of the world? I know it sounds awful to say something like that. But, seeing the most awesome people live with this and be struck down in the prime of their lives is painful and doesn't make one bit of sense.

Adina, you will never be forgotten. You made a difference.

Life of a caregiver

Today, I read a post written by a caregiver/wife. I'm not sure what her husband has, but he is dying. It was posted on a general spouse-caregiver facebook page. The last line of her post was, "and forgive yourself for not always being the best version of yourself." Oh boy, did that strike a chord with me. The truth is, being put into an insanely stressful situation does so many things to you. It can show you how strong you are. It can show you how weak you can be. It can bring out your best traits, but it can also bring out your worst. You operate on adrenaline, sometimes intense fear. Your marriage is tested CONSTANTLY. I remember, way back in the beginning of our journey, thinking that just when fate took me out at the knees, and I was feeling as weak, overwhelmed, and close to a nervous breakdown as I've ever been, I had to try to function at the highest level ever because my husband's life depended on it. My daughter was also depending on me to keep it together. I felt like I was putting a mask on every morning when I woke up. It was a mask that said, "I'm OK, I got this, I am strong, this isn't gonna beat me, he's gonna be OK, things are gonna work out." I did not believe any of those things, but I had to fake it so that my husband and our daughter thought I did. It was exhausting. Trying to be strong for SOOOO long and for everyone else is absolutely exhausting. It still is. And, just like you don't get to be 54 years old (in 3 days) and not have some regrets about things you said and did over all those years, you surely don't live under the intense pressure of living with cancer and not have regrets. Things you said, or did, or didn't do. Yup. They're there. And you know from listening to widows and widowers that the guilt you feel now doesn't hold a candle to the guilt you will feel later if/when you become one yourself.

How do we forgive ourselves? How many times have you told someone else to forgive themselves? that what they did wasn't that bad and understandable under their circumstances? Probably lots of times. But, are you able to forgive yourself in the same manner you council others to? If you're like me, the answer is no. This is something I've been working on in myself. I remember when Tim was first diagnosed, I felt bad for any and every cross word I'd ever said to him. I apologized to him for it and he said, "I'm not holding it against you." He'd done the same. We've been together almost 34 years now, over 12 of them living under the cancer cloud, in addition to plenty of other stressors and disappointments in our lives. We are human and this is a relationship between 2 people who are not carbon copies of each other, both dealing with a LOT of stress. Life is complicated. Messy even. Perfection doesn't exist here. So, we have to stop expecting it of ourselves. We have to understand that there are always going to be times in our lives when we stray a bit from the person we really want to be. We are not as patient as we'd like to be, as smart, as understanding. We don't know all the answers. We don't say and do the perfect things at all times. Unfortunately, we don't get to go back and undo some of the real bloopers that make us cringe every time we remember them, as much as we want to be able to go back and do better. So, the only other options are beat your freaking brains in about something you can't change anyway, OR

FORGIVE YOURSELF FOR NOT ALWAYS BEING THE BEST VERSION OF YOURSELF.

Because, honestly, we would not expect perfection in ANYONE living under the amount of stress that we're living under. We have to give ourselves a break and understand that we are doing the best we can and none of this is a perfect science. It's life. And life is messy. And it sure isn't perfect. And nobody, N-O-B-O-D-Y is ever the best version of themselves all of the time.

#forgiveness

Our baby is 21

It's been a week of ups and downs, mostly downs, which I will try not to delve too far into details about because this post will get too darned depressing. In my almost 54 years, there have been many times I have asked God for things that were not granted; sometimes begged would be a better word. A little over 12 years ago, that begging/praying was that the testing they were doing on my husband would not show cancer. We all know how that one played out. Over the next months/years, the prayer/begging turned to, "please don't let her lose her dad while in her formative years" and "please don't deny him the chance to see her grow up." (2 very well known MM specialists assured us he only had a few years left.) Well, for once (oh maybe there were a few more times in 53+ years) my prayers were answered. Her junior year in college is finished but she has the rental house until 5/19. She invited us down to her birthday party, before they went to the bar, where she would not have to use her fake ID for the first time. (insert eye roll here) We walked in the door to see her tan and tall (5'5" but wearing heals) and all gorgeous and made up. We were both taken aback. Where did our little girl go? The hardest thing about her being at college is not witnessing all the wonderful things happening in her life. At least we got to be part of this one. We are proud of her. Several boys came up to shake our hands and tell us how much they thought of our daughter. Girls hugged us that we don't even know and it was plain to see that our kid has made a lot of awesome friends at college. It was a happy night. Oh, and they all loved the dog. Our Lacey girl was a big hit.

But, and there's always a "but" isn't there? This is all so overshadowed this week, and always is really, with myeloma hanging over our heads. This week, it was the lives of others around us that made happiness feel so damn fragile. The day before we left to go see her, we were at a baseball game to support friends whose son killed himself on New Year's day. He was 21. They were throwing out the first pitch in his honor. This was a gorgeous, talented, amazing young man who had everything going for him, except for a vicious on-again, off-again girlfriend who was determined to make his life hell. Now, all we can do is be there for his parents and sister to show that he is not forgotten and that we are here. I hug them, HARD, when I see them, so they know I mean it. The day we got home, yesterday, I get a text from my friend that a woman we know died suddenly on Tuesday, right when her 21 year old twins are about to graduate college. Then, today, my sister calls me crying. Her friend's 17 year old son was diagnosed with leukemia at the end of Jan. and has been in the hospital ever since. Instead of getting ready to go to his junior prom, he was told things took a turn and he's going to have to have a bone marrow transplant after all. My sister had to run to her friend's house with a towel around her head because her friend "broke" sitting in her car in the driveway. She went over to hold her while she wailed to the heavens. She called out from work and is going to spend the afternoon with her. She told me she saw and heard things she will take to her grave. A grieving parent breaking after being strong for over 3 months. This is faith shattering stuff.

I got off the phone and thought about all that has happened to these families and realized that their lives entered a twilight zone, a place where nothing made sense anymore, just as our lives did on a Thursday back in March of 2007. A place where you cannot ever feel solid ground under your feet, where life is not fair or just, where you cannot even trust feeling happy because you wonder what's next. A place where you feel guilty for being happy because you know others have not seen their kid graduate high school or turn 21. A place where "friends" and even family members desert you because they don't want your problems messing up their lives. A place where you can't feel 100% joyful anymore. I hate the term, "new normal" so much. I know that it's something people tell newly diagnosed or traumatized folks so that they can hold out hope that their lives will normalize in some way, but, I'm sorry, this is just not normal. People being struck down in their prime, and children no less, getting cancer or dying is just not effing normal!!!!!! And feeling guilty for feeling a shred of joy is not normal either.

Before I went down to celebrate our daughter's birthday, I slipped a ring back on my finger that I wore for years but haven't in some time. I bought it while on vacation. The words, "live in the moment" are carved into it. In over 12 years, I have not been able to learn to do that very well. For one thing, I am a worrier and always seem to fret about the future and "what ifs." I feel jinxed after so many bad things happened in my life and always seem to be wondering when the other shoe will drop. Also, as an "empath" I get very upset by other people's pain. Sometimes, I have to stop and remind myself that I cannot take on everyone else's grief whilst struggling under my own. But, you just don't turn off caring for others when you have a big heart. However, I have to take full advantage of this answered prayer as long as I can. I have to try to live in that moment and soak it up.

SO, OUR KID IS 21. WE MADE IT!!! WE WERE BOTH HERE TO RAISE HER TO ADULTHOOD. WE ARE PROUD OF WHO SHE IS. MORE IMPORTANTLY, I THINK SHE IS PROUD OF WHO SHE IS. SO I'M GONNA BE HAPPY ABOUT THIS. WE DESERVE IT AND WE FOUGHT DAMN HARD FOR IT TOO !!!

12 YEARS

What to say that hasn't already been said on this blog? It's odd to say we feel lucky. My husband being diagnosed with an "incurable" cancer at 43 hardly comes off as feeling like a blessing. But, everything is relative. I have been immersed in the world of MM and cancer all these years and, sadly, I know many who did not get 12 years, or did not get to see their child(ren) into adulthood. I have friends who are struggling greatly right now. Tim has been luckier than most in this predicament, there is no doubt about that. After 8 years, 9 months, and one day, (but who's counting), of no treatment, he went back on Velcade and Dex in Feb of 2017. After about 10 months, he was really struggling trying to run his business, what with all the chemo brain and dex effects. He asked for a little drug holiday over the holiday season, and, one month turned into two, then three, etc. He has now been off treatment for 15 months. He's going for check-ups every 2 months and this last time, his M-spike and other numbers actually all ticked DOWN a bit, instead of up. M-spike stands at .32 right now. His doctor really loves him and is always so happy to be able to say, "you're fine, get outta here and go home, see ya in a couple of months." But, what we really do is just talk to him about personal stuff, his vacations and such, and visit for a few. Yes, we feel blessed, and lucky. We know it could have been so much worse and, indeed, the doctors were quite pessimistic way back then.

My husband's mental strength continues to amaze me. He refuses to let MM define him and he does not feel sorry for himself. I don't know how he does it. In our support group last month, several patients said that they find the mental part harder than the physical part. Our next group speaker is a therapist who will talk about that, so, good timing on that booking.

All in all, life goes along pretty "normally" if not predictably. Maybe not other folks' normal, but our version of normal. I'm still not taking care of myself well enough. Tim looks fabulous and I look like I'm aging double time. As usual, we are stuck still having to "make a living" instead of doing things that would bring us much more joy in the time we have left together. The goals for self-care or weekend trips have fallen flat, for sure. One thing that we are very happy about is that our daughter is doing so awesome in college. She LOVES her school and is thriving so much. We miss her like crazy but it sure helps to see how blissfully happy she is and how much she has grown. Tim was just saying last night that his doc told him he would not see her graduate high school, but now he feels confident he will see her graduate college in May of 2020 (I actually count off the months) and is setting his sights on walking her down the aisle one day. From his mouth to God's ears.

A new year

Warning, depressing post. New Year's Eve has never been a favorite holiday of mine. I don't hate it. It just seems to be the one holiday that brings to light the most how fast time is flying by. It always feels like we just welcomed the year in not long ago and it's already over. And that speed really gets scarier the older I get. Obviously, my husband having MM and my dad having stage 4 lung cancer only makes it worse. Reading of MM or other cancer deaths and friends running out of options, my heart just breaks every time. I enter a new year with trepidation, not wonder and joy. Some people put these posts on Facebook about the new year, looking forward to it, or feeling ready for it, saying BRING IT ON!! I found myself hoping that this next year would not be THAT bad, and that I would be able to hold up under whatever trials lay ahead. Not feeling all that mighty these days. I went right into doctor visits starting after the holiday. Yesterday, the 2nd, a visit to the cancer center with my dad. The chem screen machines broke down and he could not get his Keytruda. He still has a cold anyway so, probably just as well that he waits another week. He and my mom did not make it to my house Christmas Eve or my sister's house Christmas Day. As much as we are grateful our parents are still here, it stings that they have missed holidays this past year. Today, I will go with Tim back to the cancer center. I've already seen some of his results online. He will either be restarting chemo today, or very soon. We still have not found a new employee and he's working his brains out. Adding doctor visits and side effects to this is not going to help matters. We did not win the lottery Tuesday night, so, he can't retire. How I wish he could. Tomorrow, I will see my cardiologist and am praying that my blood pressure meds don't have to be adjusted or changed. Still having issues tolerating the last change.

BUT, all this faded into the backround this morning. I woke up, grabbed my cell phone, logged onto facebook and learned that our friends' kind, hard-working, handsome son died on New Years Day. He was just 21. I do not know what happened. Being 21 and in a college frat and it happening on New Year's day, I automatically think partying played a role. But, I don't know. I cannot wrap my brain around this, I just can't. How cruel life is. They will never know another truly joyous moment, I am sure. What do you say to someone who is going to cremate their child in a few days? You cannot tell them it's going to be alright. Life is never going to be alright for them again.

Our daughter went down with 8 of her friends to party at a friend's frat house by her college for New Year's Eve. We warn her, over and over, "PLEASE don't overdo the drinking!!! Please be careful." These kids, they still don't think this will happen to them. I did not exhale until her car pulled back into our driveway the next day.

I don't know what took Kyle from this world. What I do know, is that it's hard to feel hopeful from where I sit right now. It really is. I know that the pain my husband and I are about to witness and feel at the upcoming wake and funeral will be burned into our minds forever, but cannot even begin to compare to what his mom, dad, and sister will feel for the rest of their lives. I also know that I feel powerless to do a damn thing to help this poor family. And that powerless feeling is one that I've been dealing with a long time being a caregiver for people I love with incurable cancers. It doesn't get any easier.

All we can do is try to support those we love in whatever small ways we can muster. What else is there?  God, Fate, Life, Chance.......they will all have their say, one way or another. Loving others and being loved back, and trying to help, are the only ways to cushion the blows that life throws at us.

This year has not started off well, and all I can do is hope to have some moments of joy and love in 2019.

Parenting under the cancer cloud

Tim has told me, several times, that the hardest thing for him about having MM is having our daughter mixed up in this. He worries, as do I, about what effect it has on her, and what would happen to her life if MM takes him from us. Liv is a stoic type, just like Tim. She does not wear her emotions on her sleeve. She does not like to admit it if she's scared or nervous. She doesn't even like to admit she has a shy side. I wonder, sometimes, if she really is handling it as well as she seems to be or if she's just hiding her emotions very well. I spoke to a friend of mine about this recently. She has had MM for 12 years and I spent 5 days with her in a hotel, caring for her while she does a clinical trial that she had to stay close to the hospital for. I suppose no parent gets through this parenting deal without guilt. Add cancer to that mix and it's certainly worse and more complicated. You do your kid no favors if you don't discipline them and make your expectations clear. The world is NOT gonna give them a break because their parent has cancer or passed away. And you also don't want to raise them to be a victim or to use their bad fortune as a crutch or excuse the rest of their lives. But, there's also the part where we want to make their lives as good and normal and happy as possible, because, after all, they were dealt such a bad hand, and they were robbed of a normal childhood. And none of us wants to pass away and be remembered by our kids as a meanie. My friend is just wrapping up a month away from her son, where she missed his first day of high school and has had to try to handle things that came up via cell phone. She feels guilt over the days she's lost with him over the years, and the Dex issues that affected her moods when she was with him. But, she was and is fighting for her life. That's the hardest thing to do and trying to parent in between, well, there's no way that's not gonna be complicated and super hard.

 I look back on my parenting and there were times I was so impatient. Sadly, sometimes the only way to learn to do something right is by doing it wrong the first time. With parenting, it's YOUR KID that pays the price for your learning curve. I had to raise my child while dealing with my own life-altering health problems, my husband's cancer diagnosis and all that has caused in the last 11 1/2 years, while going through menopause, while dealing with the pressures of owning a business and a rental home where tenants can be a royal pain in the ass. Then, of course, we had to deal with the huge disappointment of how Tim's family, and a few others, treated us and our estrangement from them because of that. It's not easy raising a kid in this day and age in the best of circumstances. We were handed a lot of bad circumstances. All I can say is that our daughter was and is loved, ferociously, by both of us and she knows it. She has had our time and attention since the day she was born. We did not have her to be an accessory to our wardrobe. We had her to be a part of our lives and so we could be a part of hers. We may not have gotten everything right in this parenting business, but we did do a lot of things really well. She was raised VERY differently than both Tim and I were. And many of those differences were for the better. We've also learned a whole lot in the last 20+ years, and when you know better, you do better. I think we're doing OK, under the circumstances. I try not to let the guilt of not being perfect at it eat me up. Life isn't perfect. It is, in fact, FAR from it.

I recently started seeing a therapist to try to deal with my worry habit. Due to all the bad luck in my life, I live with this feeling of dread that the next tragedy is just around the corner. My dad's stage 4 lung cancer diagnosis certainly was one of them. We just passed a year since we found out. He has a brain scan tomorrow and will get the results immediately afterward. I dread these appointments with him the most. It's just brutal. But, it's the constant worry about my kid that is really driving me crazy. She is naïve and does not think things through. It scares the hell out of me. I'm ruining my life with this worrying. I really am. Turns out, my new therapist is exactly like me and shakes her head sometimes when I talk because her daughter is also very similar to Liv, if not even worse. Her daughter is a daredevil and wants to swim with sharks. I don't think that's something I will have to worry about. Oh, I know all those cliché sayings they have about worrying. Of course, they all make perfect sense and they are 100% true. BUT, how does one stop?

Paula Dean used to be agoraphobic, something I know a lot about. She lost both her parents young and was in a bad marriage. When she started her business, she used to send her sons out to deliver the bagged lunches she made at home to pay the bills. She said that in order to get over that crippling agoraphobia, she had to accept her death, and even that of her sons. She had to let go of her fear of death completely and I guess she felt there was nothing worse that could happen than that so she stopped getting so uptight about everything else. I dunno. It worked for her, but, just as there are so many ways people react to stress and fear, I'm sure there are just as many ways to try to get over it. I saw this quote that said, "you can spend every day of the rest of your life worrying, and it's not gonna change a thing." I'm sure that's true. I am beginning to think that constant worry is almost like an OCD type problem. In some way, I think you feel that if you worry about it, maybe it won't happen or you can be prepared if it does. I think, somewhere in your mind, you think that if you DON'T worry about something, it's going to happen. None of this is true. I've even begun to realize that my family is so used to me doing all the worrying, that they don't think they have to do any. They are almost passing their worries off to me, like, "she'll handle it, she always does, so I won't worry about that." Great. I've become the chief executive officer of worry in my house with no one to delegate to and I'm sure I am largely to blame, because I don't want them to worry either. Worry is ruining my quality of life. It is robbing me of whatever joy is left in my life. So, I will continue to see my therapist and try to rein it in somehow. Worry should be a 4 letter word. It is truly toxic. It has made an enormous impact on my life. Time to figure out how to shut it down, at least enough to let some joy seep in.

Life is such a crap shoot. Random things happen every second. I don't consider myself an overly controlling person, but, it sure sucks to feel like you have no control at all. That's a hard place to get comfortable in.

Onward.

She's an upper classman

We have just returned from dropping our daughter off for her 3rd year of college. Surreal. Other parents have told me that this is the fastest 4 years of your life and they were not kidding. It seems like yesterday we were dropping her off for the first time, and it's been 2 years since that day. This next step starts with a whole bunch of new worries. She is not on campus anymore, with security guards and cameras all over the place. We moved her into a big house about 2 miles from her school, maybe a bit less. We are more concerned for her safety. It sure did not help that, on the news yesterday, there was a report of a man breaking into a college rental on Long Island and robbing them at gunpoint. Terrifying stuff. The locals know where the rentals are. Tim and I wound up grabbing a hotel room for 2 nights so we did not have to drive home in Labor Day traffic and also because Tim didn't have much work in for this week so he wanted a little breather. So much for rest and relaxation. His employee changed his college plans and texted us his 2 weeks notice. GREAT!!! It's really hard to find good help in this field and we had to go right into blasting word of mouth out to try to find someone. The stressors never take a vacation. And, there's something about getting ready to drop our daughter off and not being on campus that has had a tough affect on both of us for weeks now. Tim actually admitted to me yesterday that it's weighing very heavy on him and he's the one that usually takes everything in stride. I feel like I have to stop voicing my own concerns to him and start playing the role of cheerleader and I just don't feel cheery. Kids these days are so much more naïve than we were at their age. They spend every minute staring at their cell phone screens and are oblivious to everything going on around them. Just last night, we went back to her rental to drop off some things we'd bought and, out of 5 girls, not one of them thought to leave any lights on when they left to go to the campus for the day. The house was pitch black and the outside light was off. It has a spooky entrance, with high bushes lining both sides of the whole front walk. In fact, one girl was just getting home when we pulled up and she was so afraid to go in by herself, she sat in her car until my daughter got home so she didn't have to walk in alone. I was like, "LIV, ya gotta leave some lights on!" OY, these kids. Tim actually installed a locking doorknob on her bedroom door, but, she has a Jack and Jill bathroom so we couldn't totally secure her room. I know, crazy, but several of these girls have boyfriends who you know are gonna be sleeping there. It's a huge house, you know there are gonna be kids crashing there after parties too. I have to keep myself busy back home here or I am going to worry myself sick. On the bright side, she is so blissfully happy at her school. She has so many friends. Tim and I stopped to pick up food to go from a place before we came home and the guy that took care of us graduated from there last year and is now going for his masters and he not only knew her, he'd just hung out with her last night. You walk around campus with her and she knows SO many people. It makes things a bit easier to know how happy she is. I just wish I didn't spend my life wishing the time away. I do it for 2 reasons. I want relief from the worries and I desperately want both of us to be present at her graduation in 20 months. I'm sure it will seem like no time at all before I'm back here posting that she graduated. But, for now, it's back to empty nesting.

I guess, this being a myeloma blog, I should give that report too. Tim has continued to stay off Velcade. He took it from Feb to Dec of last year and wanted a break, mostly from the Dex, for the holidays. Well, luckily, his disease continues to behave in a lazy fashion and his numbers have moved at a snail's pace so he keeps getting a bit longer of a reprieve. His appointments went from 4 weeks to 6 weeks to now 2 months apart. We are blessed. It's a little scary being off treatment. His one doc didn't want him off, the other one is more laid back about it. So, for now, we coast, for as long as we can. Then, it will be back at it again.

Other than that, we're just looking forward to autumn in NJ, since the heat has been just awful here. We waited so long for summer to finally arrive, only to get tons of rain and blast furnace heat. The dog days of summer.

June 21, 2018

Some days, it’s just all too much. Today was one of those days. 😢

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!!!

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!!!