Gemzar Cycle 2ish

I am two infusions into my second cycle of Gemcitabine. Today was supposed to be the last in the cycle, but it didn’t happen. Then again, there’s really no “supposed to” in my situation. I am far outside of any book regimens at this point. My doctors and I are just reacting and attacking, using my pain syndromes and my blood count levels as indicators of when we’re not using enough or hitting me with too much of the chemo drug.

We scaled down my dosage in the first cycle as my blood-clotting platelets were dipping dangerously low, disallowing me from getting the treatment as frequently as my doctors would want. Now, in this second cycle, my counts have been holding pretty well but I’ve had some bouts of wild pain set in, which makes them think that we need to whack a little harder. A little harder as in dialing up the amount of Gemcitabine I am receiving and also possibly adding in another drug: Navelbine to make sure that we are staying ahead of the lymphoma.

To my maybe not-so-secret delight, that change did not happen today. My platelet level was down to 50,000. It would be way too dangerous to treat me at that level knowing I’d drop even further and would very likely need a transfusion and be at risk for random acts of bleeding and all of that fun stuff. I get a bi-week. This works out wonderfully as I am hopping a train this weekend bound for Washington DC for some time with my college roomie. I couldn’t be happier that I’ll have no chemo symptoms to contend with (including the super swollen face look that I so adore.)

What I am having to contend with, however, is this on and off pain. It sneaks in like a jungle cat, all stealth-like, then wham – attack out of nowhere. It feels similar to having what I’d imagine the claws of a jaguar might feel like if they were scraping around in my sacral and hipbones. The nails dig in and then twist pulling all the muscles and tendons in around the pain that then emanates from that hot epicenter.

Heat helps. Pain patches help. Stretching helps. An increase in my steroid helps – though it’s incredibly frustrating to have to keep popping back up to higher doses of Prednisone (20mg currently) when I know all the side effects they come with. Even with these Band-Aids, sometimes the pain still breaks through and that’s when things really suck. A Dilaudid pill and sleep are really all that will help those times. I am grateful that it is not by any means constant and that I do have options with treating the pain syndrome.

There is no real certain way to know what is even causing the pain. My body could just be old and angry and arthritic, not at all unheard of for all the steroid breakdown my bones have probably endured, the battles going on within the bones, and how much work we’ve been asking my bone marrow to do for four years. It’s not necessarily that the cancer is growing, which is another reason why I wasn’t too keen on hitting it with more chemo today. I’d like to just ride this out a bit and see what happens over the next week. Maybe I just injured my lower back like any regular person. I mean, I was throwing kayaks around … . I kid. I was in on and off pain before that. The big reason I went kayaking was because I finally was having a pain-free day. 

What’s important is that it didn’t stop me from enjoying a weekend away with Craig, Sam Dog and longtime friends at one of their Vermont lake houses. Okay, maybe we had to delay it by a night as I waited for my pain meds to settle out, but that's what flexibility means. We made it, and it was complete with a fire pit and boat, dinghy and ATV rides, blended drinks, meat on the grill, and lots of laughs, reminiscing and catching up. Everything Memorial Day weekend should be. 

[Vermont] 

Phasing out the 'Roids

Today's Starbucks nest. 

Thursday also starts with a “T” meaning that it qualifies as a Tuesday blog post, right? Really, I am trying to get back on the Tuesday/Friday posting wagon because it’s good for me and – I imagine in my head – good for readers to be able to anticipate when posts will be up. [Is it? I’d love to hear from you in the comments.] Today’s blog will serve as a Tuesday/Friday hybrid post: Tuefday.

Ultimately, I didn’t get to writing this week because I am so damn tired and most of my energy has been devoted to laying plans for next treatment steps – with a haircut, pedicure, Hartford dinner date with Craig, and a lady’s movie and lunch date thrown in there (it’s not all medical mayhem). I am tapering off of the 10mg of Prednisone that I’ve been on for months and which has been my little comfort dose. I am now taking it every other day. Today is a no steroid day. I’m trying to replace it with green juices and smoothies and shots of apple cider vinegar and it’s helping a little with the transition. I’m supposed to be doing all of this every day anyway as prescribed by my naturopath, but I’ve fallen off of that wagon lately, too. I’m transitioning better than I have in the past, but it’s still not easy. However, if I can do this, then it opens up more clinical trials, so I will make it happen.

I’m tired for a variety of reasons:

I’m still pushing past that lingering pneumonia. It’s much less, but I’m still coughing and my nose has been running incessantly from a lingering cold. I carry wadded up tissues in my fist like my Nonna used to do. She’d tuck them in her shirtsleeve so they’d always be at hand. It’s helpful because I never know when the faucet will open. 

Nighttime sleep has been a joke – still – even after being home in my own bed. I have bad nightmares and I talk in my sleep a lot so I’ll wake up sitting up in some weird position and will have to basically slap myself to make me realize that the dreams aren’t real. I’ve also been sweating again: both as an effect of the floundering steroid hormone levels and probably the disease itself. Last night I woke up in the middle of a sweat and actually witnessed the sweat beads popping out of my skin, all over, until my legs were slick with salty water and my tank top was misshapen and heavy, a huge ring of visible wetness on it from my neck to my bellybutton. As much as Craig urged me to, I was just too tired to get out of bed, dry off and change, so I fell back to sleep chilled and smelly.

Sweats don't just happen at night either. In fact, I just had one right here. That fireplace next to me suddenly feels like the fires of hell. All of the sudden I'll break into crazy hot flashes and have to strip down to as little clothes as possible. My forehead will bead up and it'll suddenly become hard to breathe. This happens from the hormone up and downs, from the disease, and probably from early menopause, though I'm in full denial surrounding dealing with that. Oh, and P.S. My left boob is still completely numb and aches most all the time. 

The disease is on the rise and my body is in high alert mode. It’s a different tired than when I’m on chemotherapy, which is more drug induced. This is more of a natural tired feeling. It’s actually preferable because when I do fall asleep – which happens best during mid-day naps – I fall asleep quickly and into a very deep sleep. This kind of tired is felt deep in my bones and in every organ. I get to a point each day when that’s. just. all. i’ve. got. No mas. It’s like watching a computer shut down. It goes through each of the open programs and closes them in succession and the screen slowly fades. My body will get tired, then my eyes will get heavy, then my words start to slur. However, with me, no one asks if “I’m sure I’d like to shut down now”. Something greater than me is in control of the power button.

Muscle and bone aches are another prominent feature of the steroid wean. My quads feel like jello and my back muscles are sucked onto the bones as tight as Saran wrap. Without the Prednisone, the awful pain is also revisiting me in my left shoulder blade. The same pain that popped up while I was in San Francisco. The steroid must have been keeping the inflammation surrounding it at bay. It’s one little, very pinpointed spot that has the power to send these electrical flares of pain through my entire body. When it’s really throbbing, which mostly happens in the middle of the night and wakes me up, I feel like I took a bullet there and the pain is reverberating from the impact. I’ve tried Icy Hot on it, I’ve tried massaging it, I’ve tried ice packs, and mostly, like they teach in yoga, I just breathe into that sucker with the utmost focus because it’s all I can do. Oh, and I’m still on the pain patch. It doesn’t touch that kind of pain though. In fact, two Aleve are what seem to be the best for it. They at least take the edge off.

Focus has also faded. Hence, lack of blog posts. It is so much work for me to get out of the house. I am at Starbucks now, but I didn’t leave the house until noon. It’s hard for me to get out of bed, if not for Sammy Dog clicking her little feet by my bedside doing the gotta-pee dance. It’s then hard for me to get out of the shower because it’s so warm and the idea of putting clothes on and making myself presentable is so daunting. Then, I make an elaborate production of morning breakfast and e-mail, Facebook checking. Gotta make an oatmeal with nuts and seeds and fruits, green tea and a lemon water and a green smoothie and get fully caught up on correspondence and take my pills before I go anywhere. Mostly, it’s because I’m too tired to get up off the chair.  Then – shit! – it’s 11:30 a.m.

In order for me to leave the house for some reason I have to prepare like it’s the Apocalypse. It takes me a while to pack everything that I might want to work on, enough things to drink, a snack pack (highly important!), Purell, tissues, as-needed meds, notebooks, red pens, charging cords, sneakers – in case I’ll go for a walk along the trail behind Starbucks, and yoga mat – in case I’ll do a drop-in gentle class at the studio one plaza over. I even do this in my own home. I create a little nest of things I might need all around me. It’s weird and I think a habit I carried over from transplant days when I’d need things at the ready and wouldn’t have the strength to necessarily get to them.

Then, I finally get to Starbucks and they rearranged all the tables in a weird configuration that almost sent me into a panic attack. My usual spot has been replaced with three resting chairs and a little side table. The other tables are right on top of each other and broken into twosomes. What the freak? It’s like my brain is so used to handling the super, super big things in life all the time with relative ease that the easy things can really throw me for a loop. 

Tell me there’s new spots of cancer filling up my lymph nodes and I’ll digest the news no problem. Let's move forward and find a way to fix it. Hide my eos lip gloss egg on me and I can literally break into a panic. I like to blame these tendencies on the steroid taper and insomnia, which I like to blame everything on. A positive is that I’ve been much more receptive to just enjoying things, relaxing, going for impromptu outings and am looking forward to a fun weekend with friends and a dinner party planned. I’m too tired to feel guilty for not being productive and have had a big mind shift lately in realizing that just “chillin” – as my younger brother and sister always call it – is productive too, just in another way. My head and body certainly do need to “chill.”

Family, friends, doctors, and cancer confidants were in agreement with my gut on the biopsy question. I’m going in next Thursday to see the Hartford Hospital surgeon who performed my first two lymph node biopsies from my underarm. He’s very kind and very skilled. I am so fortunate that my Columbia team had no problem with me getting the procedure done locally, completely understanding the extra stresses that eliminates. I’ll be comfortable in familiar territory and close to home. They’ll be able to analyze the tissue directly as well, so it doesn’t really matter who it is cutting it out.

Thursday will be an assessment of the nodes he could go after and potentially could be the biopsy itself if he determines it’s something he could do right there in his office. Otherwise, we’ll set up another appointment in an outpatient facility. I’m hoping for the former, but am up for whatever it takes. What’s another scar and surgical recovery at this point? Treatment is halted until we get these results.  


[Sidebar]: I reworked, sliced and diced my recent blog post "The Semantics of Cancer" to meet submission requirements, and it was published on The Huffington Post. Check it out here. If you like it, please give it a Facebook thumbs up, share, or tweet it out to your personal social media worlds. You can also "like" me as a HuffPo contributor and get updates anytime I'm featured there. Thanks for following! 

Skeletons in the Closet

blog.1800gotjunk.com

We all have one of those closets that you need to kick its door with force to be able to shut it closed, as there is so much junk behind its doors. However, when it’s shut no one knows the difference nor suspects the mounds of hoarded crap on the inside.

Earlier this week, it was as if the door on mine busted off its hinges and all the junk just couldn’t be contained. Figurative glass vases, decks of cards, untouched workout equipment, old coat upon coat, dusty pillar candles, all came flying at my head. I felt as if I were buried in bags filled with more paper bags, reams of tissue paper, rolls of wrapping paper, and fabric scraps that I might use some day, drowning in the very things that that closet door usually keeps safely distant from me.

However, instead of those inanimate objects, it was every Hodgkin Lymphoma B symptom I have experienced in 3-and-a-half years of living with the disease. Things spiraled even more out of control after Tuesday. My mom came over to drive me to get my Cortisol level checked and to spend the day caring for me as I could barely see past the bridge of my own nose, woozy with pain and weakness.

Throughout the day and night, everything came flying at me: incredible pain in my bones and aches in my body tissues; shaking chills; insatiable itchiness on my lower legs and chest, sweats that soaked so bad I had to change my clothes four times throughout the night; swollen, palpable lymph nodes; nausea; a good vomit session as soon as Craig pulled in from work to take the caregiver baton; lack of appetite; fevers reaching nearly 103 degrees; weakness beyond belief. I was a hot, hot mess.

I was in touch with my nurses at Columbia throughout the day, filling them in on the downward spiral. It got to be 8:30 Wednesday night and I was so fevery, I was crying to Craig and contemplating a trip to the Emergency Room. We were weighing the options of what to do.

Then my cell phone rang, and it was Dr. O himself, calling me from California to tell me he heard about everything going on and to talk me through a new thought process. That’s the sign of a truly good doctor. He wasn’t even in his office, but took the time to call me to figure this all out and even give me his cell phone number to call or text him if anything further came up after our conversation. He immediately made me feel better as his suggestions matched seamlessly with the layman’s medical thought process I had been having also.

He didn’t even want to wait for the Cortisol level return. He knew instinctively that this wasn’t an adrenal failure, but that instead the anti-inflammatory powers of the Prednisone – even at such a small dose – had been holding back all of the Hodgkin symptoms I was now experiencing. The Prednisone had been my closet door and when that busted open, out came all the realities of what was happening inside my body. He was right. 24 hours later, my Cortisol level read at 12.4 – actually a little higher than normal.

He told me to take 10mg of Prednisone that night. Within an hour, it was as if that door was shut again and all the crashing, clanking, and screaming stopped. All was quiet, balanced and stable again. It was incredible. He told me to continue to drink fluids like a horse, which I did, and continue to do. We conceded that the NAE Inhibitor trial I was planning to go on was not right for me at this time, despite all of the set-up we’d already done to work toward it. My disease is in too much of a flare right now to risk going onto such a novel therapy with very little data behind it. I need something more tried and true at this moment.

We are instead going with a clinical trial which Dr. O had discussed with me when we first learned from my PET Scan that the Revlimid had stopped working. At the time, he had wanted to keep it “in his back pocket” because we knew that it was something that would very likely work and that we should hold onto it until I absolutely need it and try these other novel therapies until then. I can’t be burning my bridges until necessary. Options are few and far between. Well, now I need it. We need to melt this current disease.

Next week I’ll be starting up on a trial at Columbia that combines Brentuximab Vendotin (SGN-35) and Bendamustine chemotherapy. I have had both of these drugs in the past, but never in combination, and never at these lower doses. Apparently, his research team has had good luck with using them together synergistically, having put several people into remission. He hopes that that will happen for me as well. We don’t know how long a remission would last, but a remission will give us options to decide the next step and as he says “turn this into a manageable chronic disease.” I feel completely comfortable with this plan.

Monday brings me back to the city for yet another set of pre-tests and consent forms to sign, then I’ll start treatment as early as Wednesday or Thursday. Time to reset everything and refocus on this new “plan”. I’m just so incredibly grateful for that that damn closet door is again shut tight. That shit was scary in there. No more pain. No more fevers. No more vomiting. Just back to my normal aches and fatigue, which I am now oddly thankful for in comparison.  

Withdrawal and Dependency

I passed all of the pre-tests with “flying colors” to get onto the NAE inhibitor Phase I trial at Columbia: healthy heart, healthy urine, normal blood cell levels. Turns out the sponsoring drug company will pay for travel and accommodations, so I booked a hotel suite just a couple blocks away from clinic adjacent to Rockefeller Center. The amenities that sold me were the kitchenette, free WiFi, free filtered, bottled water, and a free “yoga kit” brought to my room on demand.

All of our questions were answered, the consent forms have been signed, and the treatment calendar was drawn up by the study coordinator. I would start treatment on Monday, Jan. 28, and live in midtown Manhattan through Feb. 12. It meant that I had to back out of my performance of “The Vagina Workshop” in The Vagina Monologues, as I wouldn’t be able to make the rehearsals nor the performance even. It meant that I’d have the four days free to attend the San Francisco Writing Conference I’d won a scholarship for, but wouldn’t be able to swing our long-ago booked San Fran/NoCal vacation that Craig would be joining me for – with flowers in his hair – the following week. My medical team would plead with the drug company to allow some flexibility in the regimented schedule to allow a five-day delay on the second cycle start. Results still pending on that one. 

Though the infusions themselves are only twice a week for 60 minutes, each of those days requires blood draws every hour, on the hour, for six hours afterward, and each day in between requires clinic visits for EKGs of my heart, urine testing and more bloodwork for safety monitoring and data gathering. I’d go back to the city for another overnight early the following week then have a week off before starting up the second cycle.

We had a caregiver/company keeper rotation set up between my mom and Craig, and some space built in for alone time for writing projects, which I planned to do by the natural light that pours through the grand windows of the New York Public Library. I was beginning to research Broadway shows, concerts (both Fun and Mumford & Sons are playing in the city while I’m there!). I started back up my e-mail subscription to midtown Manhattan Groupon and Living Social deals.

After much internal (and external with my husband) debate, we went away on a previously booked ski trip to Vermont with two incredible friends and a crew of their friends, who quickly and comfortably became ours this past long weekend. I was hesitant to go because I was pissed I wasn’t allowed to ski nor drink – and what is a ski weekend without time on the slopes and an après-ski IPA?

I was anxious about being away for a three-day weekend when I’d be away from home for long stretches at a time again so soon. Then, I had a change of heart and realized I was getting ahead of myself, disallowing myself fun now because of the tough stuff that was around the corner. I could still have a fun, relaxing weekend, just doing it differently. This is my new life and I can’t avoid that by getting caught up on what I used to do in the past. Adapt. Adapt. Adapt. We packed up Sammy and headed north. Craig would ski both days and I would hang back with those who didn’t.

I couldn’t have made a better decision, as the weekend was full of hearty laughs, delicious food, fun people, reading, relaxing, football watching, and dog cuddling, all in a fantastic, eclectic Vermont home with views of an expansive frozen lake and snow-covered trees made more beautiful by passing flurries of fat white flakes. I didn’t think about cancer or my upcoming treatment for more than a fleeting moment.

What I didn’t know at the time was that it was a last hurrah before shit hit the fan on the evening of MLK day. Seeing as I’ve been relegated to the couch and the bed from Monday evening to this morning when it’s now 4 a.m. and I’ve been up since awakening with excruciating pain at 2:30 a.m. yelling to Craig that I need hospice care, things have gone downhill fast. After two Aleve and a heating pad, I am off the hospice thoughts, but only the very edge is taken off. I am in some of the worst pain of my life.

This clinical trial does not allow a patient to be on any amount of steroids. I have been on a therapeutic dose of 10mg Prednisone for months now after trying to come off of it after several months at 60mg necessary to clear up post-radiation lung inflammation and having dizzy spells and blood pressure drops without it. I was told on Friday that I’d have to come off the Prednisone again, instructed to drop to 5mg on Saturday and Sunday then cut it out altogether on Monday. Being at 5mg over the weekend in VT wasn’t so bad: I had some headaches and back pain in the morning, but it went away with Aleve and breakfast. However, when my body realized by Monday evening that it wasn’t getting any, it went ape shit.

10mg is about the amount of Cortisol that our bodies produce naturally, which can be replaced/supplemented with steroid therapy. Cortisol is a life sustaining adrenal hormone essential to the maintenance of homeostasis. Called “the stress hormone,” cortisol influences, regulates or modulates many of the changes that occur in the body in response to stress. Without it, the body can’t effectively fight disease and stress or regulate itself. Well, from the symptoms I’m having there is worry that my adrenal glands, which produce the hormone, have gone caput after being in a state of stress for so many years now, going through so much treatment, and having been on so many steroids (a double-edged sword).

Without even the small level of Prednisone, I’ve been riding a wave of severe Hodgkin symptoms and steroid withdrawal: fevers in the 100 range, soaking night sweats, sleeplessness, extreme fatigue, shortness of breath, incredible pain in my back, hips and pelvis, aches and swelling in my lymph nodes, insatiable itchiness on my legs, lack of appetite, nausea. Basically, the works. 

My medical team does not like this and is highly concerned. We already know that the disease is on the rise and that the Prednisone acts as a Band-Aid masking symptoms. As my nurse explained to me today, once that Band-Aid is taken off, everything that’s been brewing underneath is exposed – hence all my b symptoms raging. On top of that, the fact that I may be dependent on the Prednisone for my Cortisol brings its own very serious dangers, as the body cannot function without those stress response functions.

In three hours I will get a blood test locally to check my Cortisol levels without the steroid. If they are less than 5, I will have to go back onto a Prednisone course, which would disqualify me for this clinical trial and wipe out all of those beautifully laid plans above. My body’s drug dependency will probably disqualify me from many trials. I don’t know yet what the plan of action would be, but I obviously need a treatment that works – fast.

If I do have enough Cortisol, it may mean that these are just steroid withdrawal and Hodgkin flare symptoms. I’ll be able to move forward with the clinical drug trial, and they’ll give me a drug similar to, but not, a steroid that will help to stimulate some of my functions that are lacking.

I’m scared and exhausted but can’t sleep due to the pain. I have to get through another whole day and night before Cortisol level blood test results return and we can determine the safest way to get me feeling stable again.

"It's better to feel pain, than nothing at all ...
So keep your head up, keep your love
Keep your head up, my love
Head up, love."
-The Lumineers

"Stubborn Love" by The Lumineers from Look Sessions on Vimeo.

Pain, Puppy, and Phlegmy Tissues

Annual Christmas tree hunt on the farm. 

The pain got to be very severe, setting in seethingly Thanksgiving Day night and increasing through that weekend. I talked with my Columbia team, and it was decided to put me on a little pop dose of 50mg Prednisone for a couple of days. If the pain responded to the steroid, it was safe to assume that it was being caused by a tumor flare (a good sign). If the pain did not respond to the increased steroid, it may be lymphoma growth (a bad sign).

With one dose, the seething pain in my back and left side completely dissipated. I’ve  been off the 50mg for a week now and the pain has remained gone. It was likely my body once again getting used to the Revlimid ramping things up after being off of it for a week while my rash cleared.

The perfect tree.

I am pain-free and nearly ache-free as well. However, I have the glassy-eyed, manly voice, and piles of full tissues that are tell-tale signs of a full-blown winter cold. I blame my husband who was sick the week prior for passing it along to me – we share everything, cute, huh? It started with a raging sore throat Sunday morning, moved to head fullness and pressure to crazy sneeze attacks and constant nasal dripping and nose blowing. This morning a rumbly chest cough has joined the scene. ‘Tis the season.

Revlimid 3-Week Update

I have been taking the Revlimid immunotherapy treatment pills for just about three weeks. I think it’s safe to say that overall I have been feeling well and that the side effects are not much at all. The initial few days on the medication were tough, but that is always the case when shocking my body with a new set of chemicals. Everything seems to have synced up nicely. I no longer have the pain I was having in my bones when I first started (remember, this was a good thing indicating that my natural killer cells were zeroing in on the cancer cells and causing a flare, we hope). The fatigue is still pretty intense, but my head is clear and I’m able to live like a non-cancer patient, so for that I am grateful.

However, I can’t say that things have gone so smoothly during my continued adventures with Prednisone steroids. As I mentioned in my latest medical blog update, I had tapered down to zero after three months of use and my body went haywire with immense body aches, fatigue and high fevers. The Columbia team put me back on 10mg along with the start of the Revlimid 10mg to get things stabilized again.

After a week, I was having muscle vibrations and loss of strength in my quads – a common side effect of prolonged steroid use. To combat this, the team agreed to wean me off again as I was no longer having fevers. I started to taper off of the 10mg by 2.5mg at a time, dropping every five days. Apparently that wasn’t slow enough.

Riding the Waves

Some days it takes a very concerted effort not to completely unfold. It can be just plain exhausting working to tame the beast that is my emotions being toyed with by hormone injection and depletion by steroids. My brain becomes disconnected with reality and the highs get very high and the lows very low.

I am a live wire and I don’t know myself when I will lash out or who or what will take the brunt. The man clothes piled on top of, rather than in, the hamper? The RNC? The husband’s crusted cereal bowl that never made it the extra foot into the dishwasher? The sound of too many electronics going at once? The nail polish that smudges with fingerprints because of my lack of patience for drying?

It takes a tremendous amount of focused effort to keep myself stable as I ease off these steroids, handle the chemo drugs, and continue to process the trauma I’ve been through and the realties of the unknown ahead.

Most days I feel balanced and whole with only forward momentum. But some mornings bring with them a heavy weight, an incessant ringing in my ears of frustrations and questions, worries about the big things (my sister is driving across the country and my brother is getting married in two weeks, oh, and that cancer thing), worries about the stupid things (what necklace will I wear, organizing the pantry, fruit flies, which vitamin brand to take).

On the tough days, a blanket of angst shrouds and suffocates me so much that it can literally be hard to see through my eyes, which are so blearily exhausted from taking it all in.

Sometimes I just can’t shut it off and it makes me want to writhe and scream.

Instead, I do my best to breathe, let go, ride the wave and hope to hell that once I can push myself back out to the break point, the next wave will be a gentler ride in. 

7 States.13 Days. Back Home in One Happy Piece.

Taking it all in at Rainbow Vista, Valley of Fire, Nevada

This is one of those get-everyone-up-to-speed blogs to update my health and life status, as I know so many of you care and are wondering what is happening. Then, I will backfill chronologically with the huge backlog of blogging I have to do. So – like it or not – you’ll be reading a lot from me from now on. I have much to share and many stories ready to burst – about my cancer treatment and life otherwise.

I’m back home in Connecticut after slews of wonderful traveling. The trip out to see my sister in her Las Vegas, Nevada element finally happened after her living out there for a year and a half. That my parents and brother could be there too was an incredible bonus to be able to have that time as the Dubreuil family. The fact that it all tied in with a childhood friend’s wedding in Malibu and that Craig and I got to spend a weekend in Los Angeles with each other and several more of our Connecticut friends and Craig’s adopted second family since childhood? This was an even bigger stroke of serendipity. All worked out so well.

It was an incredible trip full of beauty of all kinds. Did I feel like a million bucks the whole time? No, of course not. But I live on a different wellness scale, and I was thrilled and proud and astonished and how well my body did with all the activity. The reason I went back and had a PET Scan on the Friday before I left on vacation was because I had three nights of soaking night sweats and was having a lot of chest discomfort. This prompted an emergency visit and scan though I had just returned home from New York City after completing radiation on that Wednesday. Because I was planning on going away the following week, we needed to assess what was going on. As I wrote in my last update, the PET Scan looked overall pretty good; the clean areas on my sacrum and spine no less than astonishing. It wasn’t consistent with how I was feeling.

Those feelings may have just been effects from the radiation and coming off a med. The radiation gave me extreme esophageal irritation to the point where even a glass of water hurt to swallow. I had never felt that before and my hope is that I misinterpreted that chest discomfort to be lymphoma creeping in at a rapid rate, because it’s not.