We're Full of Surprises!

 I am the worst blogger. Some many wonderful blogs out there where the host keeps sending updates sometimes even on a daily basis. I barely manage once a year. Please forgive me.

Speaking of forgiveness, to my tribe I wish a Shana Tova! To all of my friends and family, I apologize for any pain, discomfort, anger and/or any and all misdeeds I may have done. One thing about this covid lifestyle, I don’t see enough people to piss too many off!

So, there were several big changes around here, but I’ll start with some of the smaller ones. My cancer kind of goes up and down, we switch medications every now and then (though I’m kind of getting to the end of the line) and keep scanning me every three months or so. Some days I’m in pain, other days just lazy. One of the cats has found I’m a pretty consistent napping spot.

Doug has been having more problems and hasn’t been able to walk the dog in months. He’s going to PT hoping to improve his balance and strengthen his arthritic ankle. He’s so anxious to get out and do stuff and gets frustrated when his body won’t agree. This getting old really sucks!

Here's the shocker, we found out in December that Doug was adopted. For 76 years no one told him. We had no clue. A while ago a DNA test we took came back 48% Finnish and listed all these Finnish names as distant relatives. Well, you know there were Jews in Finland we supposed. Or maybe there was some mix-up at the lab. After about a year, as I was struggling to find some of his father’s relatives, we did another companies’ test. This one come back 50% Finnish, and Polish, Scotch-Irish and Canadian Maritime Arcadian. Huh, how could this be… and more confusing there was a woman who was matched so close she had to be an aunt or half-sister. I contacted her to ask how could she be related to my husband… after looking everything over she concluded that it’s very possible her father might have fathered a child before he married her mother. This still didn’t make sense, Doug’s mother would never have had an affair, and she not Finnish. We called his cousin who is about five years older than Doug and asked if “by any chance could Doug have been adopted?” She got quiet on the phone and then answered “yes.”  OMG, at 76 years old the floor to Doug’s entire life just collapsed under his feet. We had no inkling that Sylvia and Artie were not his biological parents. Seems his cousins found out as teenagers but were sworn to secrecy, for some old world reason his grandmother didn’t want any one to know. I must say I was pretty impress his entire family were able to keep this secrete. If it were my family, it would have slipped out long ago.

To shorten the story somewhat, With the help of my new “sister-in-law” we were able to track down a maternal half sister and learn the story about his biological mother. Doug went from being an only child to having two brothers and three sisters on his father’s side and two sister’s on his mother’s side. We’ve been in touch with a sister on both sides and they are wonderful. They are excited to have a big brother and welcomed him with open arms.

We don’t know the circumstances of his conception but suspect his biological father, Joe, was a few days away from being shipped out for D-Day when he hurt his back and instead spent several months in the hospital. His biological mother was twenty years old and my have meet Joe preparing to go off to war. Hilma, his biological mother, had had a very difficult life. She was the youngest of five children, her family were immigrants from Finland. She broke her back as a young child and then contracted TB from drinking goats milk at a neighbor’s farm. She was sent to a sanatorium for around five years and came home not speaking the language of the parents any more. When she was ready for high school, there wasn’t one in her small town in Massachusetts, so she had to go live with a family in another town as a mother’s helper. She was very smart and got good grades. She also was a very talented artist. She got a job drawing greeting cards. When she became with child, she was sent to the Bronx, NY where her older brother lived. There she delivered her baby boy and gave him up for adoption. knowing her was going to a nice, well off Jewish couple. Sylvia and Artie weren’t well off, but they did adore their baby boy.

Here is what we surmised. Doug always said he was named for the doctor who treated his father’s varicose veins, a Dr, Douglas Smiley. Well, I looked up and the head of OBGYN at the Bronx Hospital was a Dr, Smiley and his son, Dr. Douglas Smiley was listed as on staff. Doug’s parents had tried for ten years to have a baby so one of the Dr. Smileys must have know them and their plight. Then he has this young woman who has a fine baby she needs to give up. I can only imagine the absolute joy Sylvia must have felt as this beautiful baby boy was placed into her arms.

We have zoomed once with his paternal sister and his maternal sister and cousin. They were so anxious to hear about Doug’s life and about him! Doug was thrilled to hear about them and about their parents. I must say if we had to find relatives we didn’t know about, we hit the jack pot! There are all so very nice and caring. The maternal sister had known her mother had given a baby boy for adoption, but never in her wildest dreams did she think she’d ever meet him. She told us about her mother life both before and after he was born, and she seems like an amazing person and a very talented artist. So that talent came out in our daughter, and I finally found out where my son got his nose. It never looked like anyone else’s in my family or Doug’s, but there it was, on a picture of Hilma and on her great-grandson!

I think Doug is still processing all of this. I am also getting used to my little old Jewish man being a little old Finnish man!

The kids are doing well. Henry still works on a government job as a contractor. Every year a couple of months before the new fiscal year his project is put on hold, and he can focus on his hobbies at the SCA. Besides his fighting, he is sort of an apprentice to a chef and cooks for feasts and works on preparing other medieval foods and recipes. He also makes mead, sourcrout, and mustards. He also tried to help me deal with much of my ever growing paperwork and with things needed around the house when he comes home to visit.

Sarah started a job this fall working for a placement agency from home. She is working for her old boss and loves the fact that once the day is over, she doesn’t have to deal with anything after 5 pm. Then she is free to work on her freelance art or she comes over here and gardens. She planted a lot of bee and butterfly friendly plants and gave us lots of pretty flowers to look at. She also planted several hot pepper plants that I leave to them to enjoy.

Sarah has become more involved in our medical affairs and keeps a tab on us. We enjoy her coming over to supper and just spending time with us.

There are no significant others or grandchildren to report sadly.

So, our lives right now are pretty boring, and I suppose it will continue so for a while longer. However, I really wonder if we’ll really change our lifestyle once the covid fears subside. I mean, staying home together, watching some great tv series, napping, being sat on by our animals and going out only to doctor’s appointments and to have groceries simply put into the trunk of our car, it aint so bad…

The August Surprise 

    Y’all know I’m not usually at a loss for words, in fact, if I can’t find the right words, I just keep talking anyway. And I’ve never been shy about sharing everything I’ve been through with my cancer for the last 18 years. Once, early on, I asked my then boss if I was sharing (ok, complaining) too much. She smiled and told me that when she is suffering, everyone around her is going to suffer with her (you really had to hear her say it in her down east North Carolina accent). And I've usually found it easy to share my misery, but for the first time this last week I had no words to express how I felt, even to myself.

     I know everyone is suffering with this new reality of Covid living. We are all stuck indoors, especially those of us who are at high risk, which gets a little tedious. Grocery shopping takes a lot of planning to know what to order when you won’t be picking it up for a day or two. Doctors visits are fraught with dangers when your destination is a clinic in the hospital that is actively treating Covid patients. Everyone avoids contact with everyone else, suffering hug withdrawals, unless you are lucky enough to be able to quarantine with your spouse. Of course, your spouse might not feel so lucky if you tend to be the cranky type. I’m pretty sure real estate agents are reconsidering the marketability of this open floor plan craze. 

    I think Netflix and Amazon Prime are the big winners in all of this. That brings me to the overuse of the Amazon app and the 'surprise packages’ it seems I ordered that keep showing up at our front door!

     Where was I, oh yes, what I was trying to find words for. Some things can be a complete punch to the gut, even when you’ve half expected it for years. At my last oncology visit a couple of weeks ago, I found out that the cancer has spread to my liver. That’s not a good thing. So it's now in my bones, a few nodes in my lungs, a lymph node grown round like a golf ball, and now my liver. The hope is that my cancer continues to be pokey and in three months, when I have my next scans, it will not have grown any or maybe even shrunk some.

    To aid that hope my oncologist switched me from the estrogen I’ve been on for a couple of years back to the tamoxifen (an anti-estrogen) I was on 18 years ago. Yep, slammed right back into menopause

      Dr. Carey initially wanted me to go on a chemo pill that would more aggressively go after the cancer. But it also comes with all the side effects of regular chemo. While we were all discussing the different options, she asked me what I was thinking. Before I had a chance to find a better way to say it, I blurted out “Well, I could take the chemo, be sick for the next few months, and then get Covid and die, and by then I'd have given it to Doug. That would really suck.” She had to admit that with the chemo pill my chance of exposure is increased as I’d need to go to the hospital for blood tests every three weeks. So we all agreed on the less aggressive tamoxifen and only a once a month hospital visit. So a little less misery, at least physically, for a few months.

    In other news, our cactus turned 44 years old. It has only produced single blooms three times, a few years apart, and only in the last ten years. Well, it has been totally showing off with a trio of blossoms a couple of weeks ago and about four more a week later. If the squirrels don't take them, the blossoms should turn into an edible fruit called a Peruvian Apple!  

Lots of surprises in August

I hate rollercoasters, really!

This year the Jewish New Year coincides with the 17^th anniversary of my bad day. For on October 1, 2002 Doug was at a full day training for a new job, the cat was at the vet’s getting shaved and the puppy, Rosie, was at the groomers getting her first big girl haircut. Having missed my mammogram the year before, I had a morning appointment at the radiologist. The rest of the afternoon is a blur to me, but as Doug, whom I married after he lost his first wife to breast cancer, walked in I asked him to sit down, I had something to tell him. He looked from the cat to the dog and asked in a serious tone “Who else did you shave?” I would have laughed, as I do now, except I had to tell him that there was a lump found on my mammogram and they suspect it is cancer. So started my journey into the world of living with cancer.

Life seldom gives you what you plan for, and surely I wouldn’t have ever planned on being buckled onto a rollercoaster of metastatic breast cancer, heart disease and diabetes, adding in an eye tumor, certain food sensitivities and spinal issue to make the ride more interesting. More interesting I don’t need, and since I was a child, I have HATED rollercoasters. So, there you have it, my life in a nutshell. But as I said, its not what I planned, but it’s what I have.

Now, I may sound resigned to my fate, or extremely optimistic, or even brave, but believe me I am simply doing the best I can. None of us know when life will drop a bag full of unfortunate shoes on our head, its only I can see mine hanging up swinging in the breeze. I simply rely on current cancer research, a wonderful team of medical professionals and lots of drugs to keep it from falling down as long as I can. Its not bravery, its survival.

To my friends and family who celebrate, La Shana Tova (A Good Year). May the new year bring you and yours health and happiness. I ask for forgiveness for any thing I might have done to offend or hurt you and I grant forgiveness as I know we are all doing the best we can each and every day.

For everyone, at this new season and the start of Breast Cancer Awareness Month, I urge, either yourself or a loved one, to get a mammogram or self-check for any changes in your body that are unusual. Cancer, caught early, is becoming more of a chronic disease than an absolute death sentence as it used to be.

I'm Back!

I will have to back post for the last three years as some point, but after bring on a clinical trial for 45 months here is my lastest update... 

Once again, I am doing Déjà vu as I sit and wait while the radioactive isotopes course through my veins and are absorbed by my bones to see where my bone metastases are at. I’ve been here since 8 am and have a little over an hour to wait for the actual scan. Then it’s up for labs and then wait until all my results are in and until I can get into see my oncologist. Basically, it’s an all-day affair.

Beyond the fullness of today, there was the waiting for today and wondering what it will show. Will it be nothing new and I just continue as before: the shoe still hanging precariously over my head. Or will it be the news I expect to hear after every scan and have gotten a few times on this journey, that the cancer has found a way to defeat the present treatment and we need to look for something else. One day I know I`ll hear that I`ve exhausted all known treatments and the next step is Hospice. That is when the shoes disappear.

Living under a cloud of shoes is something I don` think I`ll ever get used to. Uncertainty constantly by my side, even though I know no one is ever guaranteed what their future will be, but when you have cancer living in your body, it seems that your guarantee is that you will die sooner than later. Then to add to the mix is another health issue that causes health issues. There are many people dealing with diabetes, having to watch their carbs and balance their proteins and increase their vegetable fiber intake. But with a dairy and gluten intolerance it makes things that much harder. I admit that I am a carb lover, especially when stressed, and I`ve been really stressed lately so I seem to hit a wall whenever I try to figure out what I can eat. Which of course stresses me out even more. With that the higher than good blood sugar in my system may be affecting my heart indicating a need for another scan coming up in a couple of days. All I need with all my worry about cancer killing me is to die of heart disease first!

I was eventually called back for the bone scan. In my head I was going to be assertive as I always think I am but never do and ask them to turn the monitor towards me, so I can see as the bone scan images show up. I didn’t. No big deal, I’d be getting the results in just a couple of hours. As soon as I got positioned and the overhead plate was lowered just a few inches above my nose, my ear started to itch something awful. I mean one of those itches that almost hurts. I tried to focus my attention away from my ear and decided to think about what things in my life I really loved to do. Not who I loved, that was easy, but what activities, what interests. My first thought went to riding my bicycle as a kid. I remember the feeling of freedom, of expertise as I could ride for blocks and blocks without ever touching the handle bars. I remembered the wind in my face, the feeling that I was being held up by the wind, of almost flying. As the ear itch managed a break though I remembered how I never really truly took advantage of my freedom and my expertise. I never ventured far from home, sometimes knowing what boundaries were set by my parents and sometimes just plain feeling like they wouldn’t like it if I went any farther. I don’t know if my fear was of danger or of my parents’ disapproval. I didn’t fear their anger, I feared their disappointment, a much harsher type of punishment in my mind. When I was older and could have really been without boundaries, I didn’t push myself to bring my riding to a higher scale. At that time, it was a challenge to ride a bicycle the 30 miles from town to the beach. The road crosses many miles of marsh with no houses or stopping points along the way. This was way before even the idea of cell phones, just Dick Tracy’s wrist watch phone in the comic books, so getting stuck in the middle of nowhere stopped me from even trying to see if I had the ability to try my legs at extreme biking. Plus, I had my driver’s license by then and if I wanted to go to the beach the car seemed like the better alternative. Practicality verses testing my limits, I think the scales were stacked.

As the itch got more intense I went back to trying to come up with activities I used to love. Fishing was one, but that usually entailed getting up early in the morning which was never my favorite, and cleaning and gutting fish gave me a mild case of the willies. I could do it, but it made my skin crawl as the scales flew off and landed on my bare arms.

Playing in the sand dunes, not a federally protected entity at the time, was a fun time, unless you got a cockspur stuck in your bare foot. I loved the beach, but wasn’t a sun bather, surfer or walker, so not a real passion.

I thought I loved camping, which I had only done at summer camp. Walking to the camp site carrying my big, heavy sleeping bag in my arms (no back packs) was always uncomfortable and I was never any good at peeing in the woods and not getting my shoes or pants a little wet.

Itch itch. College, didn’t I enjoy dorm life? Except for having to share one room with three other girls I barely knew, it was good. I liked that I could just go down the hall and drop in on some friends and visit. Or that hanging out in the hallway at 3 am there was always another person to hang with. I went to a college in the middle of New York City so a campus we didn’t have. I’m sure I would have loved some self-contained community with fun things to do and a busy quad would have been nice. Itch.

Wasn’t there something I was passionate about? Reading, but books ended. Music but it was the lyrics that attracted me as my sense of tone and rhythm were severely lacking. Itch. I loved when my children were babies, but did not suffer lack of sleep well, and they both grew up on me. Itch. itch.

I began to feel the reality of the bone scan and was reliving the past sixteen years of living with cancer. The x-rays, scans and biopsies. Having to hold still on a hard, narrow table, trying to hold my breath and at times feeling like I was going to burst. What would this one show? What will my new new normal be? All questions now swirling around. Been there, done that, but the anxiety never diminishes. Itch itch itch.

Finally done and time to go up to the lab, have my blood drawn and then wait to see the doctor. I was tired, having been there since 8 am and it was now closing in on 2:30 pm. Doug was waiting for me by the lab. I had sent him home this morning, I didn’t need for him to sit around for hours with me. They called my name. I sat in the chair while they prepared to stick a fang-like needle into the port that had been inserted under the skin of my chest nine years ago. Needle inserted, tubes attached and dark red blood collecting in them. Port is de-accessed, band-aide applied, and I’m good to go wait some more.

After a moderate wait, I hear my name being called. I am asked to step on the scale that I “know for sure” lies, or my clothes weight a good nine pounds I declare. Once in a room they prepare to take my Blood Pressure, “use the fat cuff please” I always tell them as the regular cuffs pops off most of the time. I’m an old hat at this! I answer the same questions I get asked every time I come in, name and birthday. Any medication changes since last time? Am I in any pain? On a scale of 1 to 10 how would you rate it? How do I know how to rate it? I feel it but am not jumping out of my skin, four is always an easy answer unless indeed I feel like I am about to jump out of my skin. “Ok, the doctor will be in here soon.”

No, she won’t. The schedule gives her fifteen minutes with each patient. For us old timers who basically just see her to review how we’ve been doing and the results of our latest tests say that we are holding steady and our treatment should also, 15 minutes is enough. However, for anyone just coming in and getting the first confirmation that they indeed have cancer, 15 minutes barely gets them past the shock of hearing those words. From my own experience with this doctor, and I suspect other consciences and caring physicians, they will sit and answer any and all questions the patient has. She will explain the diagnosis thoroughly and go over the treatment options and outcome possibilities. Calmly, openly and caringly she sits while the tears flow, while the many questions are asked and while the enormity of the diagnosis sets in. Only when the patient and friend or family member are ready to go off and contemplate what all they have just heard does she leave the room. Every patient deserves no less. So, it is always the case that she runs behind schedule. Even so, when she enters my room she is fully there, ready to engage in my case and give me her undivided attention. She may have little to report and after the usual exam she wishes me well and she goes off to the next patient. Sometimes, like today she reads the report to me, interprets what the finding are and assures me that this isn’t anything dramatic, but probably time to find a new treatment. There are new clinical trials, reusing old treatments sometime become effective again, even switching to cousin drugs of the ones I had been on might work. Even some counter intuitive uses of hormonal treatments have shown to be effective.

When she asked me what I think I would like to do, I say I’ll do what she thinks is best, “you are the doctor” “yes I am” she repeats in a joking manor “but in reality, it is up to you. I will give you all the facts and make a recommendation, but I need your input.” I’m not sure if that makes me feel empowered, or scared. She printed out some information on the treatments and agree that we needed to see the results of the echo cardiogram I was having later in the week. We’ll meet again next week and decide.

Eight hours after I walked into the hospital that morning we are finally walking to our car. I am exhausted and want nothing more than to go home and veg in front of the TV. I didn’t want to talk to anyone or think about anything.

Of course, that is when my daughter calls to say that there is a problem with her hot water heater and some other issues. I’m so tired, but I’m still a mom and still have the real world in addition to my cancer world. There are still commitments I made to other people to get done, a house that needs attention as well as pets and my beloved husband. With both of us having serious health issues, it is the blind leading the blind most of the time, but we somehow manage to time our crisis, so they don’t seem to fall at the same exact moment, most of the time. Maybe it’s sure will power that the lesser in crisis holds off a full-blown breakdown, or a sort of magical balancing act, but we make it work.

Decisions decisions. Although I do have the support of a great medical team, and a loving husband, in reality I’m in this all alone. Do I opt to stay the same course since I know the devil I live with and hope the progression stays slow and poky. Or do I try something news, not only not knowing how it will work, but dealing with a new routine, new side effects and a new normal. Or, do I just stop it all. That is the choice no one wants me to make, and I know might be the coward’s way out, but with that I can focus on quality of life and have more of an idea how this will run its course. But it’s also a decision I can’t really bounce off anyone as I know that they would be very disappointed by it. I dare not say it to Doug, as he always feels like there is hope and we have an unspoken competition to be the first one to die. This sticks in my head when other noises aren’t distracting it. It messes with my emotions and internal stamina. I look like I’m simply depressed, but there is nothing simple about depression and this situation in particular.

I also have to consider my heart issues. If I have heart health issues they may determine what treatments I am ineligible for anyway. Or maybe my heart symptoms are simply a result of the stress I’m stirring in myself right now with my other issues.

When I return the next week, I am presented with only two treatment options: The old standby Tamoxifen, which I was on right after my mastectomies in 2003, or, they want to put me ON estrogen. Yep, after literally starving my body of any and all estrogen for the past 16 years, they want to put it back into my system. Uh, and how does this work? Well, the analogy is that if you take a starving man and force feed him a whole turkey dinner he will die, possibly explode. My cancer cells, having been starved of estrogen are now so sensitive that even a little estrogen will cause them to die. Hum, well ok. We decided to try the estrogen treatment first and use the Tamoxifen as a backup.

So how is my body reacting to a semi-premenopausal state? The hot flashes have increased. I’ve had aches and pains all over my body but I’m not sure I can blame it on the estrogen, I feel like crap, but maybe that will get better, or not. My blood pressure is better, but my blood sugar has not been, I don’t think it’s time to make a judgement call yet, I want to wait and see how the symptoms progress. But I’m not happy and neither is my body. But none of this stops me from railing on our community social network about the HOAs plan to kill our beavers, or plow down trees to put in a sewer line. I add my two cents of wisdom (worth all of those two cents) about kids acting up in the neighborhood and how adults need to enforce boundaries, so the kids can learn what is and is not appropriate. However, it seems that some parents aren’t up to adulting themselves… I’m not always appreciated for my insights, but that never stops me. Maybe when the shoes have disappeared and before I’m wheeled out feet first will I let go of the yesterdays, forgo the maybes, and give up my hope that I can do some tiny bit of good that will live on after me. This will be my time, time to focuses on those I love the most, time to say my good-byes and “I love you’s,” time to simply be. Unless I am unable to scratch my itches, then I’ll be pissed.