One Day at a Time

I know I have been on social media less frequently, but honestly most days I just don’t have the energy for it. But I am feeling pretty good today, so I wanted to update you on how I’ve been.

I’ve been in hospice care for a few weeks now, and I am thankful for my team who work hard to keep me as comfortable as possible. My energy level is pretty much zero most days, and walking has becoming too exhausting. At this time, I’m pretty much bedbound; I have not left my room since Wednesday. Fortunately, hospice set me up with all of the equipment I need. I am still able to stand and take a step over to my bedside toilet on my own when I need to use the restroom, so I’m glad about that. I’m still able to take care of my ostomy myself as well. My amazing aide gives me the most relaxing bed baths ever every Mon. and Thurs., and I always look forward to that.

I have been working through some constipation and abdominal cramping, which is not surprising considering the drugs I am on. I am getting close to finding the right combo of stool softeners, Senna, and Miralax to keep things moving without blowing up my bag. That would be no bueno! 💩 So I am hoping next week will be better than last. I’ve had some tumor pain, but my meds for breakthrough pain kick in pretty quickly. I’m also on oxygen because my levels have been low, and low oxygen can zap your energy pretty quickly, and I have none to spare. I haven’t had any issues at all and sometimes forget it’s on.

The good news is that if I have to be in a bed the rest of my life and be in one room, this one is about as cozy as it gets. It is a little surreal to be living in my parents’ dining room – something I never pictured when we had thanksgiving meals in here as a kid! – but Pops has helped me transform the room into my own comfy oasis. There are curtains on the doorways for privacy, blackout curtains on the window whenever I need to nap during the day, and I’ve decorated with pictures and items that mean a lot to me. I am very comfortable and find a lot of peace here.

My Pops should win human of the year award. I can do very little for myself anymore, and he attends to my every need without a single complaint. I am so fortunate to have him.

Sundays have been designated as Myrick family days, and I cherish the time I get with my brother and sister-in-law and my niece and nephew. I want to soak up all the family time I can while I feel good enough.

Thank you for all of your cards, texts, FB messages…they make me smile and are so appreciated. Please know if I don’t write you back right away, I’m not ignoring you, but some days are better than others.

I did the best I could to take a few pics of my room for you from my bed!! Hope you enjoy them. You’ll see that Eason has been a great cuddler!

I hope you are all well, my friends! I love you! ❤️

Peg

Update

I am so enjoying the time that I have with my family here in the Outer Banks. We have breakfast together in the AM and usually play a game or two. Then, while they’re at the beach or pool, I’m able to rest. And rest is super important, because it’s astounding to me that I’m 39 years old and can barely walk from one room to another without be coming winded and/or dizzy. This is not how I saw my life going, but as Mom always said, we can’t control the hand we are dealt, we can only control how we play it.

After just a day of first floor living here on vacation, I quickly decided that it’s time to go ahead and move downstairs at Dad’s house. Navigating the stairs is tiring, and especially if I’m dizzy, I don’t want to be on stairs. So Dad is going to convert the kids’ playroom into what will now be my room. I spoke with my hospice nurse, and she has scheduled a hospital bed to be delivered to the house on Monday.

Looking forward to a few more days in my happy place and then returning to RVA to face my new normal. One day at a time.

How I’m Doing

I’m not on my phone much as I used to be because frankly it’s too tiring and draining and hurts my head to focus, but I wanted to share a quick update on how I’m doing.

I’ve had a series of rough days, last night being the worst. I have been having fevers daily, but last night mine was 104.3 and wouldn’t go down even after taking my meds. I started vomiting and had the chills so bad that my teeth were chattering. My dad called the after hours hospice number, and the doctor thinks I have an infection somewhere and called in an antibiotic that dad went to the 24 hour pharmacy to get filled for me. I took that and some more meds, and finally my fever broke. I was up and down throughout the night and sweated through three sets of sheets on two different beds. It was one of the worst nights I’ve had. So far today has been better, so I am hopeful that will continue. Tonight will be the real test, as my fever loves to spike at night for some reason.

Other than that, I have little energy and spend my days either sitting in a recliner watching ridiculous reality tv shows or napping upstairs. I’m still able to shower myself, though I’ve been opting for soaking epsom salt bubble baths lately. It’s not a great quality of life, but as long as my pain and fever are managed, I’m good. My pops is a trooper and makes sure everything I need is attended to. And rooms keeps me laughing even though we don’t live together anymore. I live for seeing my sweet niece and nephew and appreciate when I get videos of their activities because I can’t go and watch anymore.

The hospice team has been awesome and has already ordered me and delivered a bedside table, a walker with a seat, and oxygen for when I need it. I’m happy with my nurse and aide and know I’m in good hands.

Just wanted to give a quick update and let you know I’m still here. Thanks for all the love and support! ❤️

Hospice Here I Come

Wow. This week has seen some quick and emotional changes. After a rough week health wise (dizzy spells, increased pain, lightheadedness, nausea and vomiting) and stepping back and noticing my overall decline in the last few weeks, I have moved back in with my father in Chesterfield. I miss my Rooms already, but she knows she’s not done with me yet. 😉

Also, I have decided to officially enter hospice with Hospice of Virginia. My palliative care doctor, Dr Tsukanov, recommended Hospice of Virginia, and Pops and I met with the director this week. She explained the program and the process, and I think this is the right step for me at this point.

Basically a nurse and aide will come to my house at least weekly (but as often as we determine I need), to take my vitals, document any new areas of concern or pain, discuss whether current medications and dosages are working or if we need to make some changes, and just monitor how I’m doing. When needed, the aide can assist with tasks like helping me shower or changing sheets.

I’m glad to go ahead and start working with my hospice nurse on Monday morning. He or she will be my case manager and will make sure I’m comfortable and have everything I need. I am glad they’ll be able to get to know me now so they’ll be able to see changes down the road in my appetite, mood, sleep patterns, etc.

None of this is easy, and it’s been an emotional roller coaster, but I am thankful to have family and friends who love me and a medical team committed to keeping me comfortable. Those are the positives I’m choosing to focus on right now. I still welcome all of your sweet texts and funny memes, but I appreciate you respecting that I’m not up for visitors at this time.

Buckle up, buttercup, because as they increase the number and amount of these pain meds, these posts could get quite interesting! Haha

Love you all ❤️

Keeping it Real

I’ve started this post I don’t know how many times over the past couple of days, and there’s just no good way to put in to words how I’ve been feeling, but I’m going to try. It’s not going to be easy to read if you love me – just a heads up in case you’re at your desk or reading this in your lap in a meeting or something. 🙂

In my opinion, my health has taken a gradual downward slide in the past few weeks. “Good” days, good hours, good minutes are starting to become harder to come by. The main issue is a hard to describe exhaustion unlike anything I’ve ever experienced that just envelopes me most every day. I’ve also been having a hard time regulating my body temp; I’ll go from freezing cold to hot and sweaty in a heartbeat. My new med that I’ve started has helped some with appetite, but I can still only eat small portions, and sometimes it doesn’t stay down. I honestly think that all of this is the almost three years of intensive chemo, surgeries, radiation, clinical trials, etc finally taken a toll on my body. Couple that with the growth of old tumors, appearance of new tumors, and enlarged lymph nodes that we learned last scan, and it adds up that my body just wants to rest.

The positives – I do still have some good moments that I can spend with family and close friends. I’m working hard to conserve those good times for them. Please know that I love and appreciate all of your texts to hang out or meet up or for you to come by, but at this time, I am keeping my calendar completely clear of everything except for therapy (my therapist is working hard for her money and then some these days), palliative care related appointments, and family time.

I am so thankful for all of the happy hours, first pitches, picnics, and friend time we had over the past several months. Thank you to Rooms for coordinating all of those so friends could enjoy some time with me. Thank you to all of you who came out to those events. I am so glad we had that time together to have fun while I was still feeling good.

Receiving a stage IV diagnosis a month before my mom, we had so many opportunities to sit and talk about topics like dying and quality of life and not wanting the end of life to be long and drawn out and painful and involve tubes and machines. I am thankful that cancer gave us that time together, and I am very clear headed as I navigate what next steps look like for me. There is no clear path and no easy answer, but my quality of life is definitely being negatively affected by my current situation. I will be contacting my palliative care team this week and discussing options to maybe give me some relief in some way. I don’t even know what that looks like. I don’t know if tomorrow I’ll wake up and feel more like myself again. Nothing is certain or concrete, and I’m ok with that. I am just going to keep taking things a day / hour / minute at a time.

I know I have a huge tribe of incredible people who would do anything for me, and I appreciate that so so much. Here are a few things that you can do for me at this time.

-If you want to know how I am doing or have a question, please ask ME. I’m still Peg and am still usually within arm’s reach of my phone. 🙂 If I’m not feeling well or am busy, I promise to get back to you when I can, but please ask ME directly instead of going through rooms or Pops or the rest of my fam. Honestly, how I’m doing can change so quickly, I’d likely be able to answer better than they could unless they’re with me.

-Please do not message me with ideas of how I can feel better. I promise you I am working with my team to live my best life as long as I possibly can, and they know my specific case better than anyone, plus I know my body and know what I can and can’t handle.

-If I feel up for visitors or going out, I likely won’t know that until shortly before time to leave, but if I feel up for company, I promise to post where I’m at if you’d like to come out and say hi. Just know that I can take a turn pretty quickly and have to leave in a hurry sometimes.

Please don’t misinterpret this post as me “giving up” or quitting. I most certainly am not. I am a firm believer that everyone should have a say in what their end of life looks like, and I do still have a plan that the people who need to know are aware of. No one knows when their last day on earth will be, cancer or not. I am so thankful for the time I’ve had to continue to make memories the last 2 years and 8 months since I received a terminal diagnosis. I am truly already living on borrowed time, so each breath I still get, I am grateful for.

I love you all very much and promise to keep you updated. ❤️

Palliative Care Appt

I am so happy to share that my initial palliative care appointment at MCV went very well today. I am extremely pleased with my doctors and the team approach that they take. On my team, I have a doctor that specializes in palliative care, a nurse, a physical therapist, a psychologist, a social worker, and a dietitian. I have access to all of these people whenever I need their services.

Today I met with Dr. Tsukanov, and she is fantastic. She had already reviewed all of my info from Johns Hopkins and wanted to know what my goals are. She asked me questions to find out how I’m currently doing and is putting a few things in place to help me. I’ll start a new medicine next week that will help with my loss of appetite and will also take the place of the benedryl I take nightly to help some sleep. She also put in a referral for me to see the physical therapist to help with the loss of energy I’ve been experiencing. We also updated my DNR, and she gave me the Advanced Directive paperwork so that I can update my medical power of attorney. It was a super productive first meeting, for sure!

I also met Dr. Urr, the psychologist. She was great and let me know that her services are available to me and my family as well. I told her that I’m in weekly therapy, but you can’t have too many people in your corner when it comes to your mental health!

I’m applying for a handicap placard because walking is becoming so tiring for me, especially in the heat, so that will help me some too.

I will meet with Dr. Tsukanov monthly (or more often if I start having more pain or other issues) and will go in for appointments as long as I can. Whenever going to her is too much, I’ll start the hospice process and the hospice team will come to me with any meds or anything else that I need. I’m hoping to be able to go there as long as I can.

I can’t overstate the peace of mind this appointment has given me, as the next steps when a patient goes off treatment are so undefined and uncertain. I will always love my treatment team at Johns Hopkins and give them all of the credit for extending my life by years, but it is nice to have a doctor here locally now that knows my situation and goals and that can see me without having to make a trip to Baltimore.

Rooms and I leave early tomorrow AM for Yellowstone and the Grand Tetons! This is the last trip I have planned, and I am so looking forward to it!!!

Thanks for your continued love and support! xo

Hard Day

Today has been a hard day for me, and there’s really no rhyme or reason as to why today of all days I woke up feeling mentally and physically exhausted. It’s like just standing up and moving was a chore. My theory is that they weight of everything I’m going through just pushed down heavier today.

Fortunately, I had an appointment with my therapist today. It took more effort than normal to peel myself off the couch and drive the 5 mins to her office, but I knew I had to do it. Therapy is so essential for me right now. I think mental health in general is overlooked far too often in cancer patients, especially those with metastatic disease. I have a therapist that I trust completely, that knows my goals and understands my situation, and gives me concrete strategies to make it though hard days. Today’s session was probably the best I’ve ever had, but it’s probably because I needed it most. I left with a plan for self-care for today and some things to do when this happens again.

I share this all because I want to be as transparent as possible in all aspects of what I’m going through. I am very purposeful with how I spend my time and with trying to live my best life for as long as I can, but I also recognize that every day can’t be a great day. Today was not a great day, and that’s ok.

I also want my friends to know that I love you very much and appreciate all you’ve done and continue to do for me. I’ve found myself feeling guilty for not returning texts or leaving plans to get together nebulous. Please know that it is absolutely nothing personal – I am just taking things a day at a time right now, and it doesn’t mean that I don’t care or don’t want to see you. I just need to focus on me right now.

I am very excited about my appointment next Tuesday to learn more about the palliative care and hospice programs at VCU. I have a very specific plan in my head of how I want my end of life to look, which helps immensely because so much is out of my control at this juncture. I’ll share more when the time is right and when the details are sorted out.

Thanks again for all of the endless love and happiness you bring to my life. Tomorrow will be a better day (and if it’s not, I’ll still be ok.)

❤️

I’m Home!

I’m happy to share that I was discharged from the hospital yesterday afternoon and slept great last night! I am feeling good this morning, and rooms had delicious coffee and loaded hash browns ready for me when I came downstairs this AM. Going to take it easy the next few days, but I’m glad to be out of the hospital and fever free!

Major Change of Plans

For those of you not on FB, Rooms and I had to cancel our Cuba trip around 2:30 AM when I woke up vomiting and with a 103 fever and right lower quadrant pain. I went to BetterMed, and the dr. was concerned it could be my appendix and sent me to the emergency room. Rooms brought me here around 10:15 AM, and we sat in the emergency dept. holding area for many hours, as they were incredibly busy. During that time, they did complete a CT, blood work, took a urine sample, and gave me some much appreciated pain meds. The results did not indicate what the source of my fever and pain was, so they have admitted me and put me in isolation. (Dont worry, that just means visitors have to wear a gown, not that I can’t be around anyone.) 🙂

While I’m disappointed that Cuba got cancelled, I’m so thankful that if I was going to get sick, that it happened before we left and not after we arrived in Cuba. My father is here with me overnight, and I’m very thankful to be stretched out in a bed after sitting in a chair for around 10 hours.

Thanks to Rooms and Pops for taking such good care of me, and I’m hoping tomorrow’s tests will give a better picture of what’s going on.

It’s been an extremely long day, and I can’t wait to sleep. 🙂

Good News For Once!

I’m happy to share that since I’ve gone off of all treatment, my energy has come back, my appetite is back, and I don’t need my pain pills anymore!!!

Rooms and I leave for Cuba in Friday, and I’m super stoked!! I’ve wanted to go to Cuba for as long as I can remember, and I can’t believe it’s about to happen! We have a great Air B&B in Havana with a pool, and we are learning to roll our own cigars, going to a baseball game, and heading to the beach for a day! I can’t wait!

Cuba is the official end of my bucket list that I wrote out when I was given 3-6 months back in February, BUT I feel so good that I’m sneaking in another trip in June! Rooms and I just booked a trip to Yellowstone and Grand Tetons National Parks!!! I have never been to that part of the country and am so excited to feel good enough to get to go! Thanks, rooms, for doing all of the planning (again!) so all I have to do is pack and go!

I’m continuing to spend a lot of time with my family…in fact, I’m typing this from my brother’s living room! My dad hosted a family cookout on Saturday, and I dominated in wiffle ball but lost the card game. It’s great to be making more memories with my dad, brother, sister-in-law, nephew and niece!

Life is great!