Over the past month my cancer has tested me emotionally, physically, spiritually and cognitively. This rollercoaster loop was like nothing I have experienced ever in my journey. My first summer in 2016 I had excruciating pain due to mets in my hip and collar bone, I was lucky and didn’t experience intense chemotherapy related side effects. For the most part I carried on life, blogging and volunteering at the Community Navigators the non-profit I dedicated a lot of myself too as I saw it as my legacy.
I never knew and don’t ever wish to know what I feel and felt over the past 2 months. The back pain started in February but it was similar at first to my liver spasms. Deep down I knew they were in fact different. Turing your pain into words is a very tricky thing to do for any of us, it’s just not simple. It’s like how did cutting your finger this time feel verse the time you had cut it two years ago.
I remember pushing myself to a meditation class with liver and back spasms, no idea what to come or the trials I will soon come to face. Cancer has never been a walk in the park, and I have become used to spasms to a degree but, like I said, nothing that my rollercoaster cart soon would circle me around to. I saw friends come and go as the pain, fear and sickness crept in. Some could handle Larissa slipping away, while others ran. By March, I knew things were going to be different -- I just didn’t know how. I knew I wanted to put off a scan because the last one didn’t show anything in December! How can cancer grow that fast? I kept asking myself…
But that decision too would be soon taken from me. I became too sick to drink, eat and basically function on my own. Then boom! An immense tension and power started play slinky with my spine, I held on to the counter with all my might and wondered will anyone come? After my husband came and launched me up, got me to the couch, had someone run and grab my heating pad, I shook from pain, fear and shock.
The next day = emergency MRI of my spine. I went to the outpatient MRI location but it became clear that we wouldn’t be able to do it there without pain control as laying flat on the bed would be excruciating and impossible. My mom sat in the other room traumatized as she heard me scream bloody murder. So to the ER we went, both me and my mom trying to hold it together for me. (I see this now but of course not in the moment.) I was immediately admitted which frightened me more: I’m in the wrong hospital, this isn’t Dana Farber, and oh no I’m at Hartford Hospital! What will they do to me now?
Finally, after lots of battles, Dana Farber was able to get me admitted to them. I remember closing my eyes during transport thankful to be on my way to a team of doctors who truly know my case all around. I went from hearing 10 back radiations to 1 at Dana. I was grateful to feel in good hands, pain management that was working and tests to continue to monitor me.
After having a team of doctors launch ideas around me, including me & my family, I felt safe and in good hands. No mention you will meet this doctor Tuesday, or this doctor Thursday, just a team of doctors who all wanted wanted one thing: Larissa to get better.
It took days to get my pain under control and my back to stop playing slinky. I knew I had little teeny tiny spots on my back but I never knew I grew lesions from the top all the way to the very end. I underwent radiation so I can continue to fight my liver mets. It wasn’t just back lesions I was battling -- my liver decided to hop into action too and blew up like an air balloon. We needed to act fast on both areas, so getting back to chemo was just as important. But the trick is you can only do one – radiation or chemo - at a time.
After my stay at the hospital, I went home with a very involved pain management plan and, if you follow me on social media, you would have noticed I held back on posting. It is not the easiest to post, make sense and adjust to a very involved pain management plan. I was definitely not looking my normal glam & shine self and in the first few weeks I barely saw sunshine. My first real day out consisted of Easter, we went to church, and we ate and I went to bed. But it was an accomplishment! My husband has had to be superman like he has never had to do before while standing strong - making sure I was eating, drinking, helping me clean myself up in every single way imaginable, not complain or melt down and Yes I’m happy to announce he still loves loves loves me! Somehow…. My mother who I am not always so nice to stayed strong to keep me afloat. My dad and my Aunt made sure I didn’t miss my Italian traditions: she battled her fear of dogs to bring me comfort. My mother in law flew from Poland to help take care of me and to make sure I was packing on pounds whenever she could get a piece of food near my mouth which, already 10 lbs lighter needed!
I look around at my family and I see just how blessed I am! There were moments I prepared my celebration of life and what is next for me. I struggled to hold onto hope and faith so much I really didn’t see a way out. I tried to prepare myself for the end. Then I asked my doctor is this my time? She said I don’t know but I think you’re getting better, it’s just taking awhile. I went home and looked at myself and realized the same thing: this is not yet my time. I might hurt, I might be uncomfortable, I might still experience more bad days versus good days but I’m still experiencing. Life keeps entering my eyes each and every day. Some days I WOW myself and maybe this chemo isn’t for me and the next will be. That’s ok. Maybe I’ll need more radiation and that’s ok too. But I’m not done fighting, I’m not done living! But I do pronounce April as Larissa’s Recuperation April so I can see my cousin get married in May!
No one said cancer would be easy, but no one can put into words what type of pain you can or will endure because everyone’s journey will be so different. I thought I felt cancer but now I know this stinky MBC has a lot up its sleeves and my living and loving life might be my emotional strength to arise in these dark moments. I ask people to be patient with me, I ask for your support and I ask for your endless love!
Metastatically Speaking Blogger: Larissa Podermanski
Usually when something new occurs in my journey I try to post soon after, but after Tuesday’s news I needed time to process. I love sharing the positive parts of my journey and I try to limit the negative. But the reality is cancer comes with a lot more bad news than good.
A few weeks ago I visited Dana Farber and we decided to change treatments, which came at the right time after all. On May 3, I went for my quarterly CT scan. I truly wasn’t worried.
Tuesday May 9th, I went in for my scan results and received not the best news: My scans showed progression of the cancer in both my hip and liver. No progression is good, but luckily they found it early. This time progression doesn’t change anything for me since I am changing treatments anyway. Almost a year with no progression is good and hopefully I will react just as well to the hormone drugs Ibrance and letrozole as I did to chemo, and return to stable.
Over the past several months my hip pain has flared then reduced several times per month. A part of me thought it was the weather, but I learned on Tuesday that I have a new hole in my hip, as well as arthritis, so the flares are probably a combination of the two issues. Up to this point I have been very resistant to my doctor’s suggestion that I have a hip replacement, but it’s looking more and more like that’s in my cards.
I definitely didn’t handle the news badly, I just went on with what I had planned to do that day, which was to share my experiences with my amazing nurses for a video for Starling Physicians. Before we started filming, my nurse Rachel asked if I was OK. I looked at her funny and said “Yeah, why not?” She said she knew about my cancer’s progression, but for me, sharing my story and being in front of a camera is what I love. The show must go on.
Now, three days later, the hormones -- and especially the Ibrance side effects -- are kicking in and I guess it’s time to process my reality.
What is ibrance?
Everything dealing with cancer comes with side effects, and both of my new drugs come with their share, but no more weekly infusions! So there’s that. Side effects could include: low red blood cell counts and low platelet counts, dizziness, shortness of breath, weakness, infections, tiredness, sore mouth, nosebleeds, hair thinning or hair loss (can’t catch a break there…), vomiting, rash and loss of appetite (so I’ll get skinnier … but I’m starting to miss my butt).
Overall, I’m scared. I’m scared to start new medication. I’m scared I won’t have the chance to travel across America. I’m still sad I can’t have kids (not sure where that one came from). I’m afraid to leave Martin and of the idea that he will move on one day.
This is why some of us with terminal cancer don’t always know how to respond to well-meaning comments like “You got this” or “You’ll beat this.” Look at me. I’m a positive and stubborn person, but cancer is a foe that doesn’t play fair. Cancer is something no one really has control over.
But just like Maya Angelou said, “You may trod me in the very dirt / But still, like dust, I’ll rise.” I’ll rise in the face of my cancer, and in the end I will be the winner.
Do you want to help?
This mothers day I will be spending with my mom and my husbands mother. I look at them with envy because I will not share these memories with my own kids. If you want to help donate to research this mothers day and make sure their is money going to research (especially metastatic breast cancer) you could be saving someones mother and daughter!
(Please specify you wish to donate to metastatic breast cancer research or simply note my name. Pink Agenda will make sure it will go to the right targeted metastatic breast cancer research!)
The past few weeks have been a struggle and definitely relates to the post ‘My body is as Moody as New England’. March 30th I left to visit my dad in Lake Worth Florida. My husband and I try to get away as much as possible and after we parked in JFK I remembered why. The future is unclear and creating memories while we can is our upmost priority.
We parked near where we parked last June when we flew to visit Martin’s mother in Poland. We parked in long term parking at JFK and we got a great spot closest to the train that transports you to the terminal. I could barely make it to the train and surprisingly I had the similar struggle this time but not as excruciating.
When we arrived at my fathers I had tightness in my hip but I didn’t let it stop me from taking a casual walk to the water. At this point it was on and off. Moments of extreme discomfort and times where it was manageable. (If you didn’t read my other post you would have read that I grew up as a gymnast so my pain tolerance is very high) During one of my manageable moments I decided maybe some aquatic therapy would help. I am trained in aquatic therapy after all! Nope it made it worse!
After returning home, my hip escalated. Then one morning I woke up and it was manageable and ok again. Two days later my left arm blew up like a balloon. Since my double mastectomy I've been lucky to have not had any issue on my left side of my body. Majority of my issues are on my right side like my liver, hip and collarbone. Stubborn me finally calls the doctor,
‘Hey its me Larissa, its probably nothing but figured i’d leave a message telling you that my left arm where my lymph nodes were removed is swollen and getting bigger. Its probably nothing but here is my number...’
Moments later the doctor’s nurse called me back saying, ‘you have to come in immediately’. This week was my week off from chemo. Weeks off chemo are my cancer free weeks. Cancer doesn’t follow anyones rules, especially not mine. The nurse practitioner looks me over and sends me off for a ultrasound to rule out blood clots. Back to Jefferson I go, now i’m a regular at many places by this point and this usually doesn’t bother me. Jefferson Radiology though is not my most favorite place to go. Its always a challenge for them to figure out who I am when I check in, on-top of my already growing scanxiety.
Turns out I have lymphedema in my left arm.
Lymphedema, also known as lymphoedema and lymphatic edema, is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system, which normally returns interstitial fluid to the thoracic duct, then the bloodstream. The condition can be inherited or can be caused by a birth defect, though it is frequently caused by cancer treatments and by parasitic infections. Though incurable and progressive, a number of treatments can ameliorate symptoms. (Wikipedia)
So now back to physical therapy I go, which we hope will get my arm back to normal. At this point my hip is still behaving but now i’m sick. I have not been sick since my treatments had begun. My eyes and nose are running, breathing is a challenge and maybe i’m having fevers. Seriously, when you have hot flashes a few times each hour how would anyone no the difference between fever or hot flash. But now that my sickness has escalate. Its Friday evening on Good Friday, I'm not going to get ahold of anyone until Monday and Monday my adventure to see Dana Farber happens (which needs to happen i’ll post about my trip next week). I hope its allergies, I don’t usually get allergies but chemo you lose hair in most places you might want to keep hair like my head, nose and eye brows but don’t worry you keep every strand of hair on your legs. So maybe now that I don’t have nose hairs i’m more susceptible to allergies, or I have the flu thats going around or a cold. A cold and even the flu would never be scary to me before cancer. I would fight through a flu and carry on with my daily responsibilities before. But after 10 months of chemo and an altered immune system its is rather nerve racking.
Is cancer painful? I'm sure everyone secretly wants to know this. Well, I'm beginning to write this at 6:21 in the morning. I've already been up for at least a hour, and I wasn't able to fall asleep until a few hours before that. The reason for me not sleeping and why I'm awake is because even after surrounding myself with pillows my hip and lower back pain is so intense I can't sleep. Even after waking up, the pain is even worse than when I fell asleep. To be honest, my pain has been intensifying over the weeks and now it's unbearable.
The gymnast in me makes me have a extremely high pain tolerance, so when I finally talked to my doctor yesterday it was mainly because she called asking. After all the mess ups in February and all the extra scans I was exposed to (no fault of my oncologist) I'm frankly scared to get my scans done early.
I do plan to call my orthopedic oncologist today and tell him I can barely walk again. Probably later than I probably should of attempted to call. But even when the pain is unbearable, the fear of bad news is even worse.
It's nothing, maybe it's all inflammation, hormone related or just sore from extra movement. (This is usually where I go to in my head, never in my journey with metastatic breast cancer is it actually this. But this hope provides me these few hours of sleep.)
PROGRESSION. This would be my worse nightmare. If it is progression this fast I'll probably be back in surgery. It would mean my treatment is failing and my future is unknown. This is every woman or man's biggest fear. (And the fear became even more real after my fingers typed this.)
So wish me luck, that's really all people can do. But I will see my upcoming get aways even if it hurts, I will see my cousin get married and through this pain I will rise.
Cancer you really suck right now!
Edited by a tired Larissa and probably not my best grammatically written post. Sorry in advance.