Ever find yourself sitting in the garage after you’ve pulled in, unwilling to get out of the car because the song that’s playing is making you feel something?
That was me just now, and damn, it is great to be alive.
Every once in awhile I find myself, because of a song, or a video, or a thought, or something my honey or the grandsons or the dogs do, just loving being alive. And not just loving it, but being so overwhelmingly grateful that I’m here, enjoying whatever it is that’s making me feel so much at the moment, I cry.
There’s a story behind this. Yeah, yeah, isn’t there always?
The story is a tad long, but it’s mine, and today I’ve decided to tell it. Here goes…
At the end of 2009, November it was, life was moving along just fine. Work, home, friends, family, dogs… a good life. Then, unexpectedly and out out of the blue, my honey got sick. Not just sick, but really sick. Sick as in we went to urgent care, they said oh, you have pneumonia, and here … have a shot in your bum, and go home. Only to be called by an emergency room doctor a couple of hours later who, after reviewing the blood work, told me to get her in immediately. He even told me all the other hospitals along my route in case she lost consciousness. Seems she was sicker than we were originally told. She went into the cardiac critical care unit. One of her lungs was completely full and the other was half full of stuff. This was effecting her heart as well, hence the cardiac critical care unit. She was delirious, literally. I didn’t know what she was saying half the time and she didn’t know much of what was going on. The nurses repeatedly told me she was the sickest person on that unit. She was there in critical condition for a week, before they were able to downgrade her and then finally send her home. I stayed with her at the hospital, never leaving. How could I? She’s my everything. It was the worst week of my life. Which, after you hear the rest of the story will mean even more than it does right now.
Fast forward to May 2010, six months after her illness, and I started not feeling that great. Looking back now I wasn’t feeling great for a little while, but by the end of May 2010 I really wasn’t feeling good. On June 1st we had yet another fateful trip to urgent care. Some blood work results, and they sent me directly from urgent care to the hospital, by ambulance. Seems I was so sick by then that if I’d gotten in a car accident on the way to the hospital from urgent care I would’ve bled to death. The EMTs took me directly to the oncology unit. A couple of transfusions, a bone marrow biopsy (my first of three) with the results a couple of days later, and what we feared had come true. I had leukemia. I was told that it was the deadliest form, but if I lived through the first month, it was also the kind that was curable. Scary, but… good? Yes. Good. If I lived, I thought, I might live.
I spent a month in the hospital… multiple transfusions, multiple tests, and my first round of major chemotherapy. I say first because though I got out of the hospital a month to the day that I went in, I had to go back in later in July for a second round. I was in for a week that time. Then again in August, for another round and another week. And then, in September, I got to do my last round, which was only two pushes (the last of which was on my birthday), outpatient. Unfortunately I ended up getting a neutropenic fever after that round and ended up in the hospital again, for another week, anyway.
By October I was done with the major chemo and starting on maintenance treatment. Which would last for two years and entailed me taking rounds of ATRA (the thing I started right in the beginning that really saved my life), low dose chemo in the form of pills, and a shot, every week. I had to go into the infusion center every week for that shot. It was my life, our lives, for two years. My first, and diagnosing, oncologist, who was an amazing guy, told me that the maintenance treatment was akin to sweeping the floor. Done to make sure we got anything that could be lurking. I was all for it. My attitude, during the whole thing, was let’s go. Whatever we have to do, let’s do it.
In November, of that first year, I had the third of my bone marrow biopsies. They did a molecular scan and I was cancer free. No aberrant cells found at all. Yay! I cried, my honey cried, my Mom cried. I think I might have breathed deeply for the first time since the ordeal started.
Here I am, three and half years later, no longer on maintenance treatment, still getting blood work and seeing an oncologist every three months. Leukemia free. I will do this for another year or so before, once again, my protocol will change and I will only have to go once every six months, and then, at some point, maybe once a year. Who knows. I’m OK with whatever the schedule is.
I chronicled part of this journey here, on this blog. Not posting during that initial time in the hospital, except maybe right in the first few days, but posting here and there during the months that followed. I posted about things that happened, but I never really posted about how I felt.
Damn, I’m so glad to be alive.
I was, as maybe you can or can’t imagine, scared as hell. Scared doesn’t even cut it really. I was terrified. When you hear the words, “your body is chalk full of Acute Promyelocytic Leukemia” everything sort of freezes. Slow motion starts and you look at your honey and your Mom and your brother who are all there with you and they all start crying at once. You look back at the doctor and he’s looking at you, and you say something that seems like it comes from you, and from someone else all at the same time. You say, “OK, what do we do, let’s go”. I didn’t cry. I didn’t cry at all. Everyone else was crying, but I just felt this thing come alive in me. Will. An amazingly strong will. It was there, nuzzled right up against the terror. I would be so determined and yet I kept thinking about things like, oh god, if I die my honey will be alone, my Mom will lose a child (which is unthinkable), my brother will lose his sister, that my grandson won’t know me, that my honey won’t have any more adventures with me, that my dogs won’t understand if I don’t come home. I was so worried about everyone else. Interesting. I kept rehearsing the speech I would have with my Mom if it looked like I was going to take a bad turn. The speech where I tell her to be with my honey, to help her through losing me, to comfort each other. I wanted to live, I was fighting to live, but I also had to prepare myself mentally for the other thing that could happen.
I went through some awful things while I was sick. After the first round of chemo, while I was still in the hospital, I got so sick I don’t remember much, thank goodness. I had to be helped to the bathroom (by my honey or my mom), someone (my honey or my mom) had to shower me, I would throw up and have diarrhea at the same time which the nurses would have to clean up. During this time I also had to have a test (one of many), I don’t remember which one, and part of it was that I had to drink some stuff. I remember my honey, who spent only one night away from me during that entire time (working from the hospital, sleeping there, taking care of me) having to try and talk me into drinking it because I was getting so sick from it. I was sick anyway, and having to drink that stuff didn’t help. She convinced me and encouraged me to get enough of it down so I could take the test. She also had to talk me into taking my pills every day, and trying to eat, and taking a shower. She was my champion.
Everyone talks about the chemo, but no one talks about the other things… weird little side effects from basically having no immune system, like yeast that develops on parts of your body that you can’t get rid of, and other just as lovely things. I had a reaction to one of the transfusions and had to have a major dose of benadryl shot directly into me. I had neutropenic fevers followed by loads and loads of IV antibiotics (two at the same time), which didn’t help with the nausea. I had a pic line put in that was very difficult for them to get in and three weeks later an infection from that pic line which resulted in them having to take it out. I had ultrasounds because I had so much scar tissue in my veins in my arms after pushes and lines and blood draws and IVs that a couple of times they wanted to make sure I wasn’t clotting too much in there. I ended up at urgent once, during those first few months, because I got a hemorrhoid from all the laying and sitting, that started to bleed. Gross. But, so it went.
I think the worst of it though, ultimately was, and is, the anxiety. I’m a person who never had anxiety before all of this. I’m pretty laid back. Pretty care free and pretty full of joy. Anxiety was something unknown and foreign to me. But during this I developed anxiety. So much so that leaving the house, after I had been allowed to go home, was scary for me. My body would just react… feeling like I couldn’t breathe, heart pounding, panic. When I was neutropenic, which was a lot during those first months as every time I’d have a round of chemo my numbers would crash, I had to be so careful. When I was in the hospital the precautions for neutropenia were major. Gloves, masks on everyone who came in, no flowers in the room, no fresh veggies or fruits on my food tray (and if there was, even a sprig of parsley placed there accidentally, they had to remove it quickly from my room and get me a whole new tray), restricted visitation, basically creating a germ free zone. It wasn’t just that I might get sicker, it was that I could die. My body couldn’t fight anything off when I was neutropenic. An infection became life threatening, as did a cold. So I got anxious about a lot of things. When I was permitted to go home my honey had to remove all house plants from the house (there’s a fungus that can be in the soil that could kill me if I inhaled it), we couldn’t have fresh fruits or veggies, no one could see me if they had even been around someone who might have been sick. I was weak and tired and nauseous most of the time. And just when I’d start feeling better, just when the numbers would start to rise, I’d have to have another round of chemo. My life became very boxed in and small. Hospital for treatment, then home where leaving the house (I’d have to wear a mask when I was outside the house) was not worth it or even possible sometimes. I couldn’t drive, couldn’t do anything really. My honey didn’t even sleep in our bed during this time. She slept on that same air mattress she’d used in the hospital, next to our bed, with the dogs, who couldn’t sleep with me either. It’s not just that things were dangerous to me, I was dangerous to them. I was leaking poison out of my pours most of the time. No kisses, from my honey or the dogs, no using the same toilet even, because I was toxic. All of this created anxiety in me. I still get it actually. Less and less all the time, but I do. I have pills for it. I got them a lot in the hospital, and used them a lot during those months of chemotherapy. They help. And thank goodness for them. Sometimes my mind would go and go, worrying, and worrying. A loop of worry and fear and anxiety and sometimes, panic. As I said, I’m better now, but I don’t know how many times my honey has had to look me in the eye and say to me, “it’s OK my love, you aren’t sick anymore, there’s no leukemia in you… none”. And the rational me then sort of wakes up, comes to again, and knows it’s true.
And damn, it’s amazing to be alive.
I guess I’m recounting all of this because I never have before, and it’s time. Time for me to say it aloud, as aloud as this is. But I guess it’s also because all of this is the counter point to what I was feeling just a bit ago sitting in our garage after having come home from running some errands. Nothing big happened while I was out. I just went to the library and then to the coffee roasting house and then drove home, sipping some coffee and listening to music really loud in the car. It’s sort of gray outside today and the leaves are falling. But as I drove into the garage, and shut off the car, staying in there to listen to the rest of the song (Change by Rascal Flatts, for anyone who’s wondering) I was overwhelmed. Overwhelmed because the leaves are falling, and the dogs were barking in the house knowing I was home, and I knew my honey was in her office working, and earlier today we’d gone swimming with our grandson, and the music was so beautiful. I started to cry. Crying from a place of overwhelming happiness and a feeling that life is so big and wonderful, and so fully felt.
Damn, it’s so so good to be alive.
I am grateful and I’m humbled by the quality of my life.
The thing I learned from my honey’s illness, and then mine, was something I already kind of knew anyway, but it got reinforced big time. It’s something, a feeling, I wish everyone could feel and something I wish everyone could know, without having to go through something so major, so awful. It’s the surety of knowing that there’s nothing important in life save for the people we have in ours. That is, period the end, the only thing that matters. Stuff, problems, annoyances, possessions… none of it matters. Not really. The time we spend having adventures and experiences with the people we love and who love us, that’s what matters. That’s what you think of, what you fear you’ll miss, if you think you could die.
It’s so damn good to be alive because I have so many fantastic people in my life. People, and dogs that is. People I love to be with, who love to be with me. People who I miss when I don’t see them, who miss me right back. Dogs who love me unconditionally and bring me so much joy I can hardly stand it sometimes. People who I laugh with, and get angry at, and cry with, and am silly with. People I have adventures with. People. There is nothing more important than our relationships and the experiences we create together. It’s the journey we’re making, with each other, that matters. It’s what matters most to me.
I am so happy, so thankful, so grateful, and so overwhelmed to be alive. Life is so beautiful.
It’s taken three years, but I finally wrote the email I’ve been thinking about writing for a long long time. I finally said thank you.
I could reiterate here what I said, but I think I’ll just post the letter I wrote. If there are people out there in helping professions, know that you make a difference. Know those kind words, smiles, and care, mean so much to the people you are working with. I’m so very grateful.
A caveat… I used everyone’s real name in the actual email. I just didn’t want to use them here. This isn’t the most eloquent I’ve ever been, and reading it through I’d already change some things. I guess that’s probably because there really are no words adequate enough to convey the depth of my gratitude and emotion.
Nancy…I’ve been wanting to write this email for some time. I’m sending it to you because you were always my go to contact person. No matter what the situation, you were there.Today I had my 9 month post maintenance check up with my oncologist here in Illinois. Everything was great, blood work great, etc. Every time I go in I think to myself I should write to you, and hopefully if you can pass this on, to a few other people… Dr. B, the nurses and staff in the infusion area, that first doctor at urgent care, S and T in the lab, the ladies at the front desk, and anyone else who might have come in contact with me during my treatment.In case you don’t remember… my name is Tam, my partner is K. I was diagnosed with Acute Promyelocytic Leukemia in June of 2010. I went into urgent care on June 1 and met a wonderful doctor, I think his name was EM, who treated me with such kindness and care, even taking a moment, as they were loading me into the ambulance, to come over, look me in the eye, and wish me good luck. He didn’t have to do that as he was moving on to other patients at urgent care, but he did. I entered the hospital, and if you could pass this on to them as well I’d be eternally grateful, had my first bone marrow biopsy and a transfusion on June 2, was diagnosed on June 3, and was there for a month, discharging on July 1 after a few more transfusions, tests, and my first round of major chemo. I went back into the hospital for a week in July and again for a week in August, both times for the next rounds of chemo, and then for a week in September when I ended up with a neutropenic fever. I did my last two pushes of chemo outpatient, on September 16 and 17 (I only remember the dates because my last push was on my 45th birthday), at the infusion center at Interstate. I then started on maintenance treatment in October 2010. Every week, for maintenance, I went in for blood draws and a weekly shot. I was also taking medications orally, but that was on my own. I spent a lot of time at the infusion center and in the lab. I continued treatment until I moved to Illinois in August 2011. I finished my second year of maintenance treatment here, using the same protocol Dr. B set up and I’d been following in Oregon. And as I said, I just had my quarterly visit with my Illinois oncologist. Basically the 9 month visit since completion of maintenance. I’m doing great. It’s been just about three years since it started. Amazing.The reason I’m writing is because I want to say thank you. And in writing that I don’t think I’m fully expressing the level of gratitude I have for all the nurses, both in the hospital and the infusion center, you, the ladies in the lab, Dr. B, and the other staff including CNA’s, medical assistants, the people who delivered food to me at the hospital, the people who cleaned my room at the hospital, all the techs who performed one test or another on me, and probably countless others I’m forgetting. I get emotional when I think about this, and actually have tears running down my face right now. Not out of sadness, but from that deep sense of gratitude I mentioned earlier.I know every day all of you go to work, then go home to your own lives and your own families. I know that you’re human so some days at work are harder than others because life is like that, and on top of that the work you do is also difficult. Dealing with people, every day, who are very sick and scared and hurting. It’s a huge burden to carry, yet I felt, every time I spoke to you, or Dr. B, or a nurse in the infusion center, the ladies in the lab, and on and on, that I was always heard. I found so much grace and hope and comfort in that. I was, time after time, so impressed with the treatment I received and with the humanity in which that treatment was delivered. And not only did you all treat me well, but you treated K well. She stayed with me the entire time I was in the hospital and everyone was always so warm and gracious to her. And then, after, when we were coming in to the infusion center, and every time you talked to her on the phone, she was treated with respect and care. All of that made, and still makes, a huge impact on my life. I am blessed to have met you Nancy, and blessed to have met Dr. B and all those lovely lovely nurses I came in contact with on this journey. I want you, and Dr. B, and all those others, to know how much I appreciate you, and them. I want you to know that just those little bits of kindness, bits you probably weren’t even aware you were giving and showing, made such a difference to me. I want you to know that I am so thankful to still be here, and more than that to be healthy and happy and leading a great life. I have the life I do because I was lucky enough to have all of you come into my life when you did. What you all do makes a huge difference. You might not realize this, it might not occur to you on a daily basis, but it does. It made a huge difference to me.There aren’t enough words to express the feeling I have when I think of all of you. You will all, for the rest of my life, be in my heart. And the memory of what felt like warm hugs for my soul from all of you, through a little smile here or a little comment or laugh there, while I was going through something terrifying and horrible, will be with me forever. What you all do makes a difference, a huge difference, in people’s lives. I can’t say that enough. So when the day is hard, or bad, or long, please remember that there’s at least one person, two if you count K, who is out here thanking you, and wishing for all of you every good thing that can be imagined.K and I still live in Illinois, though we miss Oregon very much, and are happily very involved in our grandchildren’s lives. We have two now, both boys. The youngest, Dominic, is just two months old, the oldest, Sebastian, nearly three, calls me Gamma Tam. Isn’t that the best?Again, my best to you, and a wish for every good thing for you…. Tamra
I’m crying. I can’t seem to stop. I dry up for awhile, and then there they are again, tears falling down my face uncontrollably. I’m not sad… no, not at all. These are tears of joy. Tears from days, and weeks, sometimes hours, and two years and four months.
Wow. What should I do now. It hasn’t sunk in yet. I think the sinking in will take some time.
I had blood work yesterday, it was great, then an appointment with my oncologist this morning. The appointment was fast. He looked at my blood work, said it was fantastic, listened to me breathe a bit, answered our questions, and then said to me go live a normal life. A normal life. Normal. Life.
I’m overwhelmed. Two years and four months, to the day, since diagnosis. 15 pushes of hard core chemo, three bone marrow biopsies, more blood work than I can count, pic line, pic line removal, tests on my heart, x-rays on my lungs, more pills of ATRA than I can count, trips to the urgent care, somewhere around 45 days in the hospital all together, 1065 pills of 6MP, 102 shots, and all the other thousand and one things that’ve gone on over the last two years and four months. Every week, for two years, every week… every Wednesday at 10:00 am.
Well now I guess I go live a normal life… and here come the tears again. They are welcome, and so is the joy the accompanies them. Live a normal life. Normal. Life. That sounds really good to me.
Here I am, last cycle, cycle 12. I met with my oncologist in Illinois last Tuesday before we left for Oregon to have my every three month check up. I asked if I could start the ATRA after we got to Oregon, meaning today, instead of last week. Didn’t really want to get the whole ATRA headache while we were road tripping. Dr. Graham was cool with that. So this morning I took my first dose. I can’t believe this is my last round of it. Today I meet with an Oregon oncologist who will be supervising my care while I’m here. Not the same doc I had before as our insurance is changed, but we have the appointment all set up with this new guy and they are planning on giving me my shot afterward. We’ll see what the dealio will be here, probably the same as what I’ve had in Illinois.
Cycle 12, last round of ATRA… amazing.
Here it is, June 1. I am amazed this much time has passed. Two years. Two.
Two years ago today I was a sick puppy and ventured into the urgent care, on the insistence of my honey and of the nurse who I’d talked to on the phone. Urgent care to hospital via ambulance a few hours later and the adventure began.
I can’t believe it’s been two years. Wow. I’m blessed, lucky, and so very grateful for all the men and women who have, over the course of the last two years, provided me with amazing care. From urgent care numerous times to hospital numerous times to infusion centers and labs and doctor’s offices I have seen the best of what humanity has to offer. These countless people treated me and continue to with such respect and gentle understanding I am humbled. From Oregon to Illinois I’ve been lucky to know them all. The genuine way they listen and treat is phenomenal. I wish I could hug each one and let them know how much they have meant and continue to mean to me. Having told them and continuing to tell them thank you just doesn’t seem like enough.
Two years. This is a great grand life I’m living. If this experience has taught me nothing else it is that a person should constantly, to the point of over doing it, express how much they care for and love the people around them. They are what makes our life fantastic and lovely. Nothing else. So to the universe of people out there, old and new, who I know and love and who have shown such great support and love throughout not just this experience but my life, I love each and every one of you.
It’s cycle ten, people. Can’t believe it. 19 months since this all started and only just over nine months to go. I saw my oncologist today. The every three month visit. I had a couple of concerns as my liver counts had been elevated for awhile. My GP even ordered an ultrasound last week to make sure everything was ok. The results came in last Thirsday and it was good. But the numbers were still high… She thought it might be my chemo meds, but since my cholesterol was also good on the lowered cholesterol med, and I’m on an eating plan and working out again, she decided to take me off the cholesterol meds completely to see what happens there. I’ll be tested in late March to see if I can stay off of them. It’s also less taxing on my liver to be off them.
So today… Met with my oncologist. My numbers, CBC and Metabolic panel, were all good. Even my liver numbers, save one, we’re all back in the normal. The one that wasn’t was barely elevated over high. And this was me…. Sigh…. Relief. My doc allayed all my anxiety, which always rears it’s head in a big way right before I have the quarterly. To say I get anxious doesn’t fully describe it… I’m usually afraid of the what if. Not rational, but true none the less. This is when Ativan is my friend. That and hearing him say everything is great and I’m doing fantastic. Yes brother… Thank you!
So here I am… Cycle 10. Two to go. Entering the realm of taking 9 ATRA a day for 15 days on top of the weekly shot and the daily 6MP I’m already taking. Headache… Here we go. Tylenol and staying hydrated… Both become my good friends. And before you think I’m complaining… I’m certainly not. ATRA saved my life… Along with hardcore chemo, the love of my honey, family and friends, and fantastic medical staff. So there’s no complaining out of me. Zip.
What there is… There’s a huge sense of being grateful, being alive, being blessed with more love from family and friends than I can measure. Life, this life.. My life… It’s beautiful. And I am thankful for it, and for the ATRA I start taking today.
Cycle 10, people…. I’m in the last several months of maintenance now. This life is a wonderful miracle and I am more fortunate than is possible to express. So ATRA… Let’s go!
It’s been a busy busy weekend. Friday night dinner at Stan and Connie’s, with Stacia, Kev, my honey and I. It was a great time. Excellent food, as always, fantastic company ( I love you guys), and just really relaxing and comfortable. Then yesterday Karen and I headed over to Maggie’s for a pumpkin carving party (plus chocolate treat making and some great ribs… thanks again Kate!). We carved pumpkins, made chocolate pretzel treats, ate some great ribs, chatted it up with the pod (the name we all use for this particular group of women we hang out with), and watched some football and the World Series game. Also a fantastic time with a fantastic group of women. We love you guys. It’s always so good to spend time with you. This time pretty special since it was the first time we’ve been able to get together since the whole leukemia thing happened.
Today, Halloween, we are hanging at home. Karen and Kev are out doing yard work… picking up and blowing leaves. Quite the chore around here. Earlier they went to winterize one of our rentals (they also picked up a chicken sandwich and potato wedges for me… my first craving realized. :-) I have started craving stuff again. It’s a thing I really never thought about before, but craving stuff is something I haven’t done in the last few months, my appetite and such is coming back… it’s a good thing. It’s actually pretty nice out there. Perfect fall day for doing the leaf thing.
This week coming up I have a blood draw, a bone marrow biopsy, and possibly my weekly shot on Wednesday. Last week my neutrophil and white counts were down a bit after getting the shot the week before and taking the low dose chemo for a week (the red counts were up a bit, which is great for the energy level). We asked my doc some questions about it, he looked into it a bit, and ended up taking me off the pills (since Friday) and we may hold off on the shot. I will be back on both when my counts are up again. He may adjust the pill or shot amount to keep my counts from dropping too low. We don’t know how low they will go if I stay on the current doses, etc. It’s a process of finding the right thing for me. I’m still on the ATRA (I have a few days left on my 15 day cycle this round), but the other stuff, both low dose chemo, is on the back burner until after the blood test this coming Wednesday, which will happen before the bone marrow biopsy. Then, on the 10th, after another blood test, and probably a shot, we have an appointment with my doc to chat about maintenance and everything. We are trying to get the plan, and me, stabilized so that Karen and I can go to England in December and January, as planned. Everyone cross your fingers, send those vibes and prayers, wishes, and hopes, that all goes well this week and that we get everything else worked out. It would be great to meet my grandson and spend Christmas with him and his parents.
For now, today… I’m keeping track of my fantasy football teams and hoping for a couple of wins (I’m in two leagues… LOL). I am also hoping for a win for my honey. Goooooooo honey!
Hey all… been a few days. Again. We had a busy weekend, a lay low day on Monday (Karen had to work, but we didn’t go anywhere), went to get some new glasses ordered for Karen yesterday and stopped off at the park to take the dogs for a walk on the way home, and now today we are going in for my first shot and to pick up my meds and do my blood draw.
Last weekend… had a great weekend. Went to a family dinner at Mom and Don’s place on Saturday. It was great seeing everyone. Really good. Had some tasty vittles as well. Then Sunday we went to Chris and Jessica’s wedding. It was great seeing so many people from the Juvenile Department. I miss them and it’s always so nice to spend time with them. They rock. The wedding was nice as well. Casual, comfortable, and laid back. Nice. Congratulations Chris and Jessica!
Maintenance starts today. Two years of it, but hey… I get to get back to more of a normal life. That’s the best part. I will have a shot every Wednesday that we have to go to the clinic for and a med I’ll be taking every day. Then there’s the ATRA that I will take for 15 days every three months. Not too bad really. We can work around it. We picked Wednesdays for the shot so that we could go away for a long weekend if we wanted to and it wouldn’t interfere. We are now working with Nancy to try and get it squared away for our planned trip to England over Christmas. We already had our tickets before this all started and now are trying to work it out so that I can get my shot from an oncology department either in Lancaster or close to it. Go Nancy!
I have an appointment with an ear, nose, and throat doctor on Friday. My oncologist referred me. I have this itchy throat that won’t quite go away. Some days are better than others, but it’s annoying. It makes me cough… sometimes so hard I start gagging. Though I have a really sensitive gag reflex so it doesn’t take much. But anyway… Dr. Bigler didn’t see anything in my throat, but wanted me to see someone who could look a little bit more. They may put a little camera down my throat… yuck. We shall see on Friday. I just hope they can do something about this itch. Maybe it’s allergies… maybe it’s my throat, etc. healing after my GI track was beaten up all this time by chemo… we don’t know. Like I said… we shall see what the doc says on Friday.
Otherwise…. the weather is good. Supposed to start raining tomorrow evening, but for now it’s beautiful. Blue sky out there. Really lovely. I love fall weather actually… it’s sunny, yet crisp out there. It’s supposed to get up to almost 70 today, which is wonderful, but it’s crisp out there right now. The light is always so fantastic in the fall. Did anyone see that moon the last few nights? Wow. So bright out there. Hope everyone has been enjoying these lovely lovely days!
So I had the blood draw today. Good news… the neupogen must be doing it’s thing because my white blood count is up a bit, not normal range, but up, and my neutrophils are up enough that I’m no longer neutropenic… yay! The bad news… my red blood counts are all down. Not unusual since this is my nadir period. Nancy said they could still be going down a little. The thing is… they are down enough that my oncologist decided I needed a transfusion. Bummer. I have to go in tomorrow morning at 8:30 to get it. Poor Karen. First day back and she has to get up early to take me in for a procedure that takes about 4 or 5 hours. At least we will get to talk. I love that she’s home. I haven’t said much about it, but it’s been hard at times not having her here. I’ve been through quite a bit in the last month and have missed having her with me. I’m so glad she was with Mary during this time, but I did miss her terribly!
So, another damn IV tomorrow. Hopefully my last for a long while. Good thoughts for that.
It’s been a few days since I posted anything. Not much happening around here, for me anyway. Just laying on the couch being sort of tired as my numbers are down. Blood draw tomorrow. Here’s hoping the neupogen has done it’s job (had to get three more shots, for a total of 11… the last of which I gave myself today) and the white blood count and neutrophil count are up. Tomorrow is technically my nadir (the low point) so even if the neupogen hasn’t given me raised numbers they should start coming up on their own. I’m hoping for a more rapid increase because of the neupogen, but we shall see. As to my tiredness… my red counts were down on Monday…. and according to reports from Mom and Kev I’m looking pretty pale, which I always do when my counts are low. The neupogen doesn’t do anything for the red counts, so we just have to wait for those to come up on their own. They usually take a bit longer normally Again… interesting to see what they will be tomorrow.
The good news is that I haven’t gotten a fever so far… knocking on wood now… and so haven’t had to go to the hospital this time around. I’m hoping that holds and I don’t get one, and don’t have to go. I guess if I do I do, but it would be nice not to.
The best news is that Karen comes home from England tomorrow. I know she is having a hard time leaving Mary, Martin, and Sebastian, and I totally sympathize with all of them. This long long distance thing is so hard. I am glad though that she’s coming home to me. I have been so well taken care of by Mom and have loved having her here, but I’m sure she’s ready to go home as well. Mom says she’s loved spending this time with her kids… after all, when does a Mom get a chance to spend a month with her grown kids like this. Pretty nice, even if the circumstances haven’t been ideal, it’s been wonderful. I have missed Karen terribly though and am so glad she is going to be on her way to me in just under two hours. It’s a long journey for her… she will be traveling for 18 hours… and she will be exhausted. But, she will be home… It’s been our longest time of separation and I can’t wait to see her face.
Just got the news from today’s blood test. I am, once again, neutropenic. Numbers are low. They are hoping they don’t stay low for long, given that I’m on the neupogen. Here’s crossing our fingers, toes, and whatever else you can cross, that I don’t get another neutropenic fever. I haven’t had a fever at all so far this time around. I’m checking, as I’m supposed to, several times a day. It’s day 9 of my cycle. Usually my nadir is around day 16, nadir being the lowest point. I got the fever last time on day 12. Come on Neupogen, do your duty!!
Otherwise I’m a tad tired, but doing OK. My red counts are all down slightly, but not enough to really matter. I’m still way far away from having to have a transfusion or to have platelets. That’s all good.
Had a great visit from Stan and Stacia today. They were here for a bit. Always nice to see them. I’m feeling tired now, sorry Jimmy for putting your visit off. Getting the number news sort of zapped it out of me.
One day at a time folks… so far today is OK. Cheers all….
Man oh man… I have been really good about holding it together through this process. Staying focused, not letting it get the best of me, etc. Very good actually. Keeping my eyes on the prize as they say… the end of the consolidation rounds, entering maintenance, not having these ups and downs in my numbers that cause all this other craziness to happen. I’ve been doing great…. and then today happened.
I know it’s natural… bound to happen. I just kind of have been falling apart all day. Crying, feeling overwhelmed. Really missing my honey. Wishing I could be with her and our new grand baby. Or even wishing she was here. I know I will get a grip. Tomorrow will be better and I will be back to my fighting self… it’s just been tough today.
Taking a big breath right now….
OK… snapping out of it.
Don is here tonight. He came to spend the night and part of tomorrow with his honey. So nice. And… Stan, my lovely friend, came to visit me today. It was good to see him. Always is. His daughter is in the process, I think, of giving birth to his new grandchild. Only three days apart from ours. Kinda cool.
I’m bucking up… getting it together. This has been a message from your emotional broadcasting center… but this has only been a test. We will resume our regular broadcasting immediately… not as emotional… strong, determined, and resilient. That’s the me that’s getting me through this…. and will continue to.
Well folks…. I’m back in. Spiked a fever and had to come in for antibiotics. My counts are very low… So the plan… I have to be here until my counts reach a certain level. Until then I’m here, on antibiotics every six hours…. And constant saline. We are hoping not too long, but it’s all number dependent… So we’re rolling with it. Mom’s been fantastic!
My sweetie made it safe and sound to Lancaster…. No real travel hiccups. I’m so glad. I love that woman!
Here we are… day 10 from the start of the last consolidation, and I am very neutropenic again. Red blood cells and platelets are OK, and normal, but the WBC and neutrophils are low low low. Nancy says the lowest they’ve ever been. She said no big deal other than I have to be very careful with myself… the usual when I am neutropenic. The biggest thing is infection, making sure I take my temp a few times a day since that would be the only sign of infection. Nancy says this med, the chemo this time around, is new to me, so we really didn’t know how I would respond… and here it is. The other thing is that my numbers were just coming up when I went into the hospital this last time, so the fact that they went down so fast isn’t probably that unexpected (this is my and Karen’s guess, Nancy didn’t say this). Who really knows. I’m hoping they are down, and will spring back faster than last time. It took them a week or so to come up last time. This could be the bottom, but then maybe not. I don’t know how they could get any lower, but then I guess anything is possible. Let’s just hope the RBCs stay up, as do the platelets. No transfusions if I can help it. :-) And let’s hope the numbers come back fairly fast so I can get out and about again fairly soon.
Otherwise I am hanging at home, watching the US Open first round on TV, Karen is working and gathering stuff to get ready to pack tonight, and things are pretty normal around here.
Hope everyone is having a great day….
Got a call this morning saying that they had scheduled me for an ultrasound. I’d called the oncology advice nurse yesterday because my veins were still sore from my last round of chemo. Results of the ultrasound were that I have two small blood clots…. One in my arm and one in my hand. Two oncologists talked to the radiologist who reviewed the ultrasound and determined that I have superficial thrombosis. No treatment (which would have been anti coagulation drugs) was needed. Unless other symptoms manifest they should resolve on their own. I’m supposed to have another ultrasound in four weeks to make sure things are copacetic. Until then it’s ice and heat and hopefully the pain will go away.
Otherwise there’s no word yet on the loos draw I had today as well. I will share that news when we get it.
Hope everyone is having a fantastic Thursday. I feel better knowing what’s up with my arm and hand. The moral of the story is…. Get it checked out if it’s out of the normal. Cheers everyone.
Last night I discovered something amazing… I dance better bald. It’s true. Granted I was sitting and dancing, but that just makes the head movement all that more important. I’m sure it’s true though, so it can only mean one thing… hair creates resistance. My head moves more freely naked. A positive since we dance a lot around here.
Today has been a pretty good day. Karen went into the Portland center to finally clean out her office there (she hasn’t used it, really, since she started working from home but still had stuff there. This was the last of it for her and I’m sure makes her feel good about finally getting it done.
While Karen was gone Mom came over to hang with me. It was great getting to see and spend time with her. Mom is great company. She also watered some plants outside and repotted a plant someone had brought as a gift for me. Nice Mom… you rock!
Now there’s a lasagna baking in the oven and Karen and Kev (and Riley) are out in the shop working out. I’m here in the house blogging, watching TV, petting Weston, and waiting to eat the food my honey has made.
Went in for the bi-weekly blood test today and the results are in… I am, once again, neutropenic… yay????? (sarcasm folks! LOL). Good thing we were preparing for this and acting as if I was already. The only no no we committed was that I went in for the blood test today without a mask on, and then we went into Starbucks and I didn’t have a mask on. We told my caseworker this and she said that I am on the edge of neutropenia… 1.4 WBC and .715 on the neutrophils. They are low, granted, and I am neutropenic, but they aren’t in the really really low category. The good news is that the RBC counts are all still OK, so are the platelets. At least I don’t need a transfusion, which I could’ve told them anyway since I don’t feel really really fatigued. I do feel a bit tired, but really today I have been feeling pretty good. I got a little stressed after finding out I was neutropenic, but hey… I’ll get over it. We were hoping my numbers might be coming up from Monday. My caseworker ventured a guess to say that she expected they might start coming up by Monday’s test. I hope so. The other issue is the herpes I have on my lip. It started showing up today, which makes sense since this happened to me in the hospital when I was neutropenic. My body can’t fight it right now so Karen is now on her way to the oncology pharmacy to get a new prescription for me… the same anti viral they gave me in the hospital to fight the lip thing. It’s not that bad now, pretty small really… we just noticed it and told Nancy about it and she sprang into action. We don’t want it to get bad so we are being proactive. The other good news is that I still have no fever.
It’s an adventure this is… Nothing really changes for us since we have already been acting as if I am neutropenic. Here’s hoping the numbers rise as of Monday. :-)
Tuesday… Blood results were as expected, I guess. White blood cells and neutrophils are low, though I wasn’t in the neutropenic range yet. We don’t know if they are still falling or going up, so we are acting as if I am neutropenic as they weren’t that low, but they were close enough. My red blood cells are still in the normal range so I’m not needing a transfusion. Hopefully I won’t need one. I really don’t want to have to get the IV if I don’t have to. I’m feeling a tad tired, but not really that bad, which is good. The truth of the numbers will be told by the blood draw on Thursday. We will at least know if the numbers are still doing down or coming up. It will be good to know.
Karen has been and is still swamped with work. So busy. Loads going on, problems she’s needing to solve, etc. At least she got some sleep last night. Makes it easier for her to deal with all that’s going on. She’s loving the weather right now… working outside on the back deck under the umbrella at our little table. Her laptop fits and she’s got the phone with headset. The dogs are both out there with her, laying on a blanket in the shade. Rough life for the little dude and dudettie (one of Karen’s nicknames for Riley… there are a million of them, all cute).
Thanks everyone for following along, for sending those great vibes, thoughts, prayers, etc. I know I keep saying this, but I feel them and they matter to me. This journey has been a bit isolating (out of necessity) and getting notes and comments and such from all of you lets me know, and keep knowing, that I have such a big group of people out there who love and care for both Karen and I. It matters to me and to us more than we can say.
Went in for the blood draw today. After that we sat in the waiting room of the oncology department for an hour waiting for an advice nurse. She finally came out to tell me that the sore spot on my hand, the one with the lump in it that is where I had an IV during my last hospital stay, has phlebitis. Apparently either the push was too fast for that vein or something. Either way the vein got inflamed, which is why it’s sore. The advice nurse told me if we got to it earlier it would’ve been easier to treat. I asked her if it would go away and she said possibly/probably after a long time. Yeah?!! I’m hoping it does. I’m going to try the treatment she said it needed initially and see if, a week later, it still helps. Basically we’re talking ice and heat and tylenol. I’ve already done the tylenol. LOL We’ll see what the ice and heat do for it.
As for the blood numbers… They are down… the white blood cells and neutrophils down quite a bit. I’m not neutropenic yet (and maybe won’t be), but we won’t really be able to tell which way my numbers are going until I get the draw on Thursday. For now we are going to act as if I am neutropenic just in case they are going down. They are close enough that precautions won’t hurt. We know what to do. No fresh fruits or veggies, no people with colds or people who have been around people with colds, no dirt, and no people who have cleaned the cat box (strange I know, and we don’t really know why, but this is a biggie). Apparently being around the dogs is OK. At least that’s what they told us before. We are going with that. And really… I’m not neutropenic yet, and again, may not even get there.
It was a long Monday. Karen was/is exhausted. My honey had to get up at 5:45 this morning for a meeting and then worked non-stop, meeting after meeting, until we left for the clinic at 2:15. That all on top of not really sleeping that good. She then drove me to the clinic, waited with me for over an hour in the waiting room like the trooper she is, drove home (with a stop at the store), made dinner, and then cleaned out the fridge of fresh fruit (she is sitting in front of a bowl of watermelon trying to eat it, with Kev’s help, so we can get the fruit out of here) and then cleaned the fridge where the fruit was. I know I keep saying this… but, I love her.
The dogs just got a rare treat… a taste of watermelon. They don’t normally get people food…. other than an occasional veggie mixed in with their food, but they are always happy when they get a little treat. Like now….
Sunday, day 9. It’s been a similar day to yesterday… decent morning, slightly rocky afternoon… but not bad. My honey went to the store today, cleaned the house, and has been outside washing cars and cleaning and weeding and playing in the shop. She is a busy girl, and amazing. The little girlie is out with her, the boy is laying next to me on the couch chewing on an old bully stick Karen found in the car under the seat. He is a happy little man.
It’s beautiful out there again today…. a little hot (I was just outside for a couple of minutes) and a tad humid, though that could just be me and my bald head in the sun. I wasn’t out for that long. Now I’m here again, on the sectional in the family room, watching the third in the Librarian series on TNT. These movies are so corny and not that good, but that sort of makes them good. I can’t seem to stop watching them.
Tomorrow Karen is busy busy in the morning… she is still getting emails today about that work situation yesterday… and then, in the afternoon, we are going in for my first blood draw of this series. We will see what my numbers are. I think they are down, but I don’t feel that tired, so maybe not really. It will be interesting to see what happens between tomorrow and Thursday, when I go in again. Back to the bi-weekly blood draws.
Nothing much else going on here. Kev is still camping, but coming back some time today. I think I have another week of ATRA. Will be nice to get a couple of weeks off from taking it when I get that chance. I have a nice fan blowing on me right now. Seems my thought has become somewhat freeform, which probably means it’s time to wrap up this entry.
So here we are, day 8 from the first day of this last chemo round. All in all I’m not feeling too bad. Woke up well, but have felt a tad queasy since lunch. Took the temp and it’s all good, no temperature, and that’s the biggie.
Karen ended up having to work today for awhile. Got a call from her boss asking her if she and some of her team could rectify a huge issue in another department. Not even Karen’s department, but they fixed the problem. Once again, she steps in and gets it done. That’s my girl. Pretty amazing.
Right now she and pups are on their way to the vet to get some more heart worm med for the dogs. They went along to get a little adventure. She’s going to score a chai while she’s gone. She deserves one. As for me, I’m sitting here drinking green tea and watching HGTV. It’s not a bad way to spend a Saturday afternoon. :-) Later, a much needed bath…. LOL I’m finally done sweating out the poison. Not longer the toxic avenger this time around. Sheets washed, Weston can once again sleep with his mamma, and Karen can once again, sleep in the same room as me with the dogs. Back on her air mattress. Yes, she’s been sleeping on an air mattress on the floor next to the bed since I came home on July 1. Safer for her when I’m sweating it all out, better rest right now for both of us. It’s not ideal, at all, but it works. She is so amazing. That girl knows how to love and take care of me.
It’s been another day hanging at home and enjoying the company of great visitors. Stan, love you man. It’s always so nice to sit down with you for a bit and chat. I miss you and seeing you always makes me feel good. Sean and Hayden… nice to see you guys as well. It’s been a while and you two are so very sweet.
Right now Karen is at Dairy Queen getting us a couple of little Friday celebratory blizzards. LOL It’s been a long week and we are both glad it’s Friday. I’m hanging in there. Feeling a bit tired, but not bad, which is great.
We have no major plans for the weekend. It’s about waiting to see what happens with me, etc. We may just lay low and be quiet and enjoy being home. That would be nice. Knowing my honey though she will find loads of little projects around here. She is the true energizer bunny. I can’t begin to say how much I appreciate and love her.
Here I am, here we are, back at home. Good to be here. Got up, after having slept really well, had my usual Cheerios with ATRA and some tea, took a shower to wash off the poison that’s now, once again, leaching out of me, watched some TV, Karen went to the store between her work meetings and came back and made me a great chicken caesar wrap for lunch (yum yum!), and I had another cup of tea, this time green. Like I said… good day so far.
I’m not feeling too many effects yet from this round… yay. My plan is to get on the treadmill in a bit and at least do a little walking. Gotta try to keep that strength up and getting better as much as I can.
Love to everyone out there who is standing in my corner, sending me love, vibes, thoughts, blessings, and prayers. I am bolstered, honored, so deeply touched, and amazed by the stellar group of people in my life. Every day I think of you, and every day it lets me know how beautiful my life, and life in general, is. Thank you.
Here we are…. day three. It’s quarter to three and I’ve had breakfast and the morning ATRA, I took a shower, Karen has been working like a fiend with meeting and after meeting this morning (so nice though that she can work from here), we scored another ONC verizon internet portable modem for her so we can both be online for free (nice since last time she bought one and paid $50 for it… she thought she would have to do that again, but didn’t… yay!), I had the adventure of them trying to get another IV in, I got my third push, and have eaten lunch (ceaser chicken wrap, baked lays, peaches, and an iced tea).
The IV thing was, once again, a bit of a process. One person tried twice and couldn’t get one in. One in my hand blew, only not as badly as the one last week when I got my biopsy. That IV nurse then called for reinforcements while they gave me an Atavan to try and help calm me and wrapped both my arms in very warm blankets and towels trying to get my veins to rise. Wow. Luckily the second lady had the touch and got a line in on her first attempt. Whew. The push went without incident except for a bit of a burning sensation. Probably a bit too fast on the push, but at least the vein held. One more to go and we are out of here in the afternoon tomorrow and back home for recovery. If I hold true to form I won’t feel any real negative effects for nearly a week, if I feel any harsh ones at all. I’m sure there will be something or another, but we’re hoping for not as bad. Fingers and toes crossed and all good thoughts, wishes, and prayers coming my way accepted. :-) It’s going to feel good getting out of here tomorrow and going home. After the inordinately long stay last time, it will be good to leave after only a few days, accomplishing our mission with expediency and all success. After this only two more rounds to go. Woo Hoo!!