I kinda left y’all hanging… My last visit to the doctor was so brutal that I could not even write about it. I can recall every detail and every word exchanged. I choose to spare myself and you the nitty gritty of it all. In […]
Tag: medical care
Last month I struggled with a sense of aimlessness. I am now about five months into remission and that feeling still exists to some extent but has been overtaken by a sense of doom. Thankfully I am not moving through my days feeling depressed. I get to work and get things done in a day. This sense of doom is more like background noise. A feeling like I can’t trust my body because it could be or will be at some point harboring more cancer.
There are two contributing factors to these feelings. The first is that my oncologist urged me to see a genetic counselor. I went. The counselor mapped my “pedigree.” Which means she literally had a sheet a paper with a circle in the center. That circle represented me. She then asked me questions and formed branches off me to represent my family and their histories of cancer.
My tumor has already tested positive for MSH6, a category of hereditary Lynch Syndrome cancers. We know I got this from someone up the line. Couple that with the very limited information I was able to share about my family and it was obvious that cancer runs in my family and genetic tests were warranted. (All that has to be establiished and signed off by a docor before insurance will cover the tests.)
I gave them some blood and we went ahead with the full bracket genetic tests, testing for 68 genetic markers. The results will help my doctor better assess what proactive steps we can take to keep cancer from stealing my life away early.
The second contributor to my sense of doom is that I also joined a couple closed facebook groups for people with Lynch Syndrome. The conversations in these groups are very informative but also kind of frightening. There’s some scientific information on our kinds of cancers but in these groups, we share personal experiences. I may have to just stop reading the posts. The stories have been at times reassuring, make me feel less alone but they are also scary.
It’s heart-wrenching to learn how aggressively they push people who test positive to have preventative surgeries, rather than allowing cancer to ever form. For example, if they knew I was positive for MSH6 when I was 18 years old, doctors would tell me to have the children I want to have as early as possible and then remove my uterus ASAP. These are the conversations young people with MSH6 have with their doctors.
The stories shared also illustrate that it seems a person with Lynch Syndrome gets cancer, gets a break, then fights again. We may get a 6 month to 16-year break in between fights. But no one can speculate how long their break will be. If you are proactively testing your body, many people live into their 70s or 80s. But not without a fair amount of pain and ruin in your life.
The testing is miserable and happen in annual rotations. If they catch something then it’s surgery, perhaps chemo, perhaps radiation, all the ramifications of the treatments… and then of course if you are really unlucky, it could mean death. The cancers focus on the reproductive and pooper regions. (Don’t you love my science talk!?!) But they can pop up almost anywhere, like your skin, stomach, brain or pancreas.
The shit’s serious enough where anyone who does genetic testing and comes up positive is no longer eligible for life insurance and your eligibility for health insurance becomes limited. So now I have to think about the fact that I will never be able to get life insurance and the impact that may have on my family.
Couple that with how the medical bills continue to come in, the unraveling of the financial progress we had made before I was diagnosed, and how this has all put us in a hand-to-mouth financial state– you can see how one might feel a sense of doom?
We are not hungry, but we are struggling to live up to all our obligations. Thank you to those of you who have donated to the YouCaring campaign. It really has helped us. We’d be royally fucked with you.
But like I said I am keeping my chin up. I got good fight in me. I got my husband, family and friends to back me up in this fight.
I have been working on crossing things off and adding things to my list of things to look forward to. I have started that new tattoo!
There are people all over the world who carry the mermaid inside them, that otherworldly beauty and longing and desire that made her reach for heaven when she lived in the darkness of the sea. -Carolyn Turgeon
My brother’s wedding happens in a couple weeks! I am his best man. The next Deadpool movie will be released in May! Soon I will be buying seeds and begin my garden for the year. And we have added a staycation in July to our plans. We live just five miles from the beach, so we are going to pack a cooler and lay on the beach for a week.
There are good things are happening along with having to learn how to be a survivor. I’m trying to stay focused on the positive while facing all the realities. I can do this.
I have added some resources on genetic counseling, Lynch Syndrome, and the facebook groups I found to the resources page.
I’m presenting ‘Sex For Survivors: Healing After Trauma’ at Smitten Kitten. There will be limited seats but please know getting there is the hardest part. Once we start, there’s lots of love and ideas for how to squeeze more out of your lovely life. April […]
This is a timeline of my healing process. I’m creating it to remind myself how far I have come and to help other people who experience a robotic, radical hysterectomy to know what they might expect. Doctor’s say it should be six weeks until I am fully healed… let’s see how this goes…
Nov 17, 2017 / Day 1: Surgery day.
Stayed overnight in the hospital. Woke up in extreme pain, not in my abdomen, but in my right shoulder. The gas they use during surgery to inflate the abdomen and allow tools to move through the body rose to my shoulder and damaged my rotator cuff that I had previously had surgically repaired. Did not expect that.
Six hours out of surgery I experienced my first heat surge. (Hot flash.) So weird! My little body was asking WTF? Where’s my parts!?!
Day 2: Laying in my hospital bed I asked my husband if he knew what happened to my uterus after surgery. He said he believed they incinerate it. I happily declared my uterus to be STARDUST! As it should be.
Hard day of walking and proving to the hospital staff I was ready to go home. Holding a pillow or small folded blanket up to the tummy helps in moving the body and supporting the abdomen. Timed the pain meds well so they were in full effect when we got in the car. Forty minute drive home and walking up the stairs to our apartment was still very painful. Straight to bed with pain meds.
Husband created a log of my medications to make sure we know what I took and when I took it. He also starts to stagger the meds so I never fall too deep into pain. I have Advil and Tylenol in 5-hour intervals and Oxycotin in 6-hour intervals.
Chicken soup is all I can tolerate.
Day 3: I’m slow as a sloth right now. My stomach muscles are wracked by the damage done in surgery. Husband has to pick me up out of bed. I can’t do much but lay here and heal. He props me up on my feet every few hours and I walk a bit. He is my anchor. I use my arms to pull myself up or let myself slowly down on to a bed or chair. He had to give me a shower. All I could do was hold the wall for balance. My abdomen is so tender. Spent the whole day sleeping in bed or propped up on the couch. I can feel my body taking all available energy and diverting it to the healing process.
Every time I use the restroom I do a little tour of the house, just to keep my blood flowing and gain some mobility.
Today I expanded from chicken soup and managed to eat a banana too.
Day 4: I have five wounds. Feels like I lost a knife fight.
The exciting news over here is that my husband washed my hair. Little things make me happy right now. I’m off the hard pain meds during the day. Helps clear my mind. I started wearing post-op compression panties and they help a lot! I can walk with more ease. I make my own breakfast. I am counting every little win. Doctor’s office called to see if I have pooped. First time anyone has called me to ask that question. The answer is… nope.
Day 5: Huge win! I was able to sleep on my side last night, thanks to the compression panties. They are ugly but effective. It remains really hard to find a comfortable position to sit or sleep in. Once I do find a comfortable position, something starts to hurt. There is a constant need for my husband to stuff blankets under my knees, or help me reposition my back. At night I wake up aching in places that shouldn’t hurt but do because I ask every other part of my body to compromise for my abdomen.
Day 6: I am sooo so so exhausted all the time. I can walk with ease now. At least for a few minutes. Still hard to get to my feet from a sitting or lying position but once I’m up I do ok.
Using Advil and Tylenol as needed. I still write them down as I take them tho, just to make sure I am not over medicating and it helps me understand my pain levels.
I’m covered in bruises from needles and adhesive that is just too hard to scrub off. They taped a lot of stuff on me.
Husband had to take the dog to the vet. Looks like my dog has an ulcer. My husband is smoking cigarettes. Something he hasn’t done in more than 3 years. My cancer is proving to be hard on everyone around me.
Day 7: Happy Thanksgiving! I am able to stand up on my own!
My dog is doing ok. The medicines seem to be helping him. He’s resting a lot today. Husband is sleeping the day away. We are all healing. (Husband has had a full-time job just watching over me and helping me with basic needs.)
Thank goodness for my mum in law… she is here taking care of us. She is cooking a beautiful meal and managed to save the holiday for us!
On a side note, I had major pain in my shoulder last night. It kept me up. Something is also wrong with my vaginal flora. I have no idea what it could be because I have no cervix and strict instructions to leave my vagina alone. So I’ll just remain baffled and hope it can wait until my follow up appointment next week.
I managed to write a blog post! I can’t eat too much but I tasted everything from the Thanksgiving spread! That and wearing polar bear PJs = I feel pretty good tonight.
Day 8: One week ago at this time I was in surgery. Today I am wearing real people clothes! (No PJs!) I had a miserable revelation today tho, my shoulder started hurting again last night. I got up to pee and suddenly realized what is happening. When I lay on my back my shoulder is dislocating. It’s not a total dislocation. It just opens the joint enough to allow the ball of my shoulder to teeter on the edge and cause a ton of pain. Gave my husband a 2am lesson on how to relocate my shoulder. I really don’t want to experience shoulder surgery again. Hoping I can heal it and fix it with physical therapy.
Oh and sneezing with five abdominal wounds… I’m gonna venture to say it feels like being stabbed.
Strapped on my Fitbit today to get an understanding of how well I am moving.
Total steps: 878
Day 9: Hard to sleep last night as I woke up all night to make sure my shoulder was in the right position. But I managed to sleep one night without dislocating my shoulder. It’s still super fragile. It can dislocate from washing my hair, using my arms to lift myself up, or simply laying on my back. Muscles in that arm are so sore and require I keep it pinned to my side. The shoulder restraint strap I bought online arrived today. Hopefully, it will keep my should in place during my sleep.
Most of my abdomen feels pretty good, but I still have this debilitating pain on my lower right side. I believe it’s just in the muscles but it’s stabbing and wince-inducing as I try to move through my day.
I am more comfortable standing than I am sitting or laying down today. But I can only stand for so long before I need to sit down.
Multiple heat surges today. It’s just minor annoyance tho. Cutting every ounce of sugar to beat it. (Even tho I am consuming very little sugar.) Starting communicating with a coach at Noom Coach. She asked me to start tracking my food so we can analyze it together. (I plan to lose a LOT of weight so I can reduce the estrogen-producing fat in my body. This will help me stay cancer free down the road.) As soon as I am able I’ll start walking as much as possible. Yoga will need to wait until my shoulder is fixed.
Went outside today to walk a little. Also, softly loaded myself into the car so I could run a quick errand with my husband.
I am still just miserable trying to find a comfortable way to sit or lay down. With all the bills piling up we can’t afford to buy a recliner chair, so I bought this lawn chair. I am hoping it will help relieve some of the back and shoulder pain. I plan to pad the fuck out of it with blankets and sleep in it too. This will help me to find comfort and not dislocate my shoulder in my sleep.
Total steps: 1638
Day 10: Still moving slowly. Feeling pain on my right side. I think that is where the positioned the surgical camera so there is more trauma in that area. Experienced a mild dislocation of my shoulder last night. But I am sitting in a soft office chair this morning with little pain. Started writing my Christmas cards and blogging.
My only comfortable position today is to sit on the couch with my back hyper arched. It takes the pressure off the sides of my body for periods of time.
Still can’t pick anything up off the floor. I have been trying to pick things up off the floor with my toes, like a monkey. I am not very good at it.
Total steps: 1735
Day 11: Still very uncomfortable in almost any position… standing, sitting, or laying. I am also antsy to be done with the whole process. I want to be my “regular” self. I want to bop around the house and get shit done. But nope. I need to pace myself. I still feel a searing pain on my right side when I move wrong. Each day the pain moves a little in one direction and lessens a little. But it remains. Reminding me to slow down and be good.
At least my mind is full of good things. My mum in law has helped me start with the Christmas decorations. I have written many of my holiday cards. I am writing. I started crocheting again today. I have couple projects in the works. So I work as long as I am comfortable. Then I get up and prepare to be uncomfortable in another position and place.
Tomorrow is the big day when we get the lymph node pathology. That will tell us if I need more treatments (chemo or radiation) or if I am free to get on with my life.
Total steps: 2018
Day 12: Last night was a rough night for pain. Tears streamed down my face as I could not find a way to stand, sit, or lay without searing pain on my right side. In the end, I realize I have been pushing it. Doing too much. Trying to get strong when I should just sit and relax. I had to revisit my Notes to Myself on How Not to Fuck Up My Body’s Healing Process. Thank goodness past me had the presence of mind to leave sane notes for now me.
I’m a workaholic. My entire life I have known, whatever problem I may have, if I get up and go to work, I can get through it. Work is my survival. My paycheck supports my family. My husband is a disabled combat veteran. We really can’t afford this. But I know I know... I need to push these thoughts aside and let myself heal. Anyway, my goal for the next couple days is to walk a little less and be a lump on the couch a little more.
I have been sleeping at night in a lawn chair. It’s the only thing I can sleep in and not cause pain to some part of my body. Whatever works, right? My bed was starting to feel like pain trap. The only sad thing is now my animals take up my side of the bed and they will now have the forever expectation that they own that area. It’s ok tho, I’ll win that round when the time comes!
This afternoon my husband and I went for my follow up visit with my surgeon. She manages my medical trauma issues well. Like how I try to avoid exams or shake uncontrollably during the exam. My logical brain says, “It’s cool. Ths is no big deal. Let’s do this.” My lizard brain says, “Fight! Run! Defend!” The two of us crack jokes and move through the process.
She informed me the right side pain is normal. There are stitches in my muscles there. I need to be patient and let them heal. Otherwise, my insitions and vagina look peachy. Healing up just fine.
Best news of all tho? No signs of cancer in my lymph nodes!!!! This means no further treatment. When I heal up and out of this surgery, and the pain dissipates… life will go back to normal. Wiser, more empathetic, and still whole. (That’s my goal.)
We shared the news with my whole family. The rest of the night felt lighter. Until this point, we felt confident we could beat this cancer but had no clue how long or painful it might be. Feels good to know everything on my Things to Look Forward To list will be more attainable now.
Total steps: 1360
Day 13: Cut my activity back to a target of 1000 steps a day. So weird to now use my Fitbit to limit my activity as opposed to motivating my activity. Had to run to a medical lab to check for UTI (just precautionary, use they messed with my urinary tract during surgery) and by the time I was done, that was all I could do today. I was still in pain by the end of the day. My husband has asked that I keep this limitation in place until Monday. Bluck. But if it means less pain, I’ll do it.
Oh and when I was at the doctor office the other day she asked me to make an appointment with this genetic counselor. She would not tell me why, she just said, “Do it.” I had to look up what a genetic counselor does… it turns out that’s the person who will explain more about my awesome genetic inheritance and will explain to me how we will test, manage, and seek to prevent reoccurrence. I am looking forward to that appointment.
Total steps: 1155
Day 14: Went for a short ride in the car but it’s still too painful. Every bump and curve makes my abdomen ache. But for the first time since surgeryI have slept through the entire night without having to get up to pee. The pressure on my abdomen is subsiding if only just a little. Thank goodness! Slowing down and doing less during the day is helping me heal.
Total steps: 460
Day 15: I’m so angry. My insurance company denied the claim for my stay in the hospital. As if it was optional or my choice? I swear its some kind of extortion scheme– taking a person fresh out of surgery, while on narcotics, with two IVs, and catheter– the doctor tells us they are keeping me overnight. A couple weeks later I get a letter in the mail saying my stay is not eligible for coverage. What was I to do? Craw out of the haze and call the insurance company? GO against doctors orders pull the catheter out of my urethra and IVs out of my arms and insist I can not afford to stay? There is a place in hell for those who get rich off the illness and misfortune of others.
Total steps: 1459
Day 16: Slept through the night again. Less stabbing pain. I am still in full sloth mode in my efforts to heal the stitches inside my body but I’m really looking forward to when I can walk a ways and workout again. The doctor had removed the tape over my incisions earlier this week. They then put bandages over two of them, just to protect them. My husband finally removed all bandages and used these pads the doctor gave us to remove all the adhesive. Now I am tender and itchy. I can’t really look at the ouches because they sort of freak me out! At glance, they look like they are going to heal and not be very obvious. Good thing for me I like scars. I like them on my own body and on others. They are a badge of survival. A scar usually has a good story. A person with scars has depth worth exploring.
Total steps: 1267
Day 17: My mum in law leaves tomorrow. I don’t know how we would have survived without her. She cared for us, our house, and our animals. She endlessly cooked, cleaned, and kept up with daily tasks, taking so much weight off of us. She made us laugh, watched lots of TV with me, and even put up our Christmas decorations. I’ll miss her.
I can’t help but feel heartache for anyone who does not have people in their lives to help care for them in times like this. If you are a fellow survivor and you are reading this and you are preparing for surgery… I beg you to accept the help people offer. If you don’t have a rock like my mum in law, create a schedule for will friends so you can help them help you. Let them bring you dinners and help you with basic needs. Get humble, gather your friends and family and invite them in.
On a separate note… I still can’t bend over and reach the floor. I can reach things in lower cabinets. I can’t pick things up off the floor when I drop them. I can’t put my own socks on. Small problems when you consider where I was two weeks ago, but still annoying.
This experience has however taught me my husband is as good at put clothes on me as he has been at stripping them off! And I’m a few weeks into surgical menopause and I am tickled to say my libido is still whole. Flirting, desire, anticipation… it’s all here. This makes me very happy!
Total steps: 1765
Day 18: If I overdo it during the day I am an aching mess at night. Yet my think skull refuses to remember this.
Total steps: 2210
Day 21: I’m getting out of bed, sitting and standing with more ease. I am still having to do everything at sloth speed tho. Sucks. I get to go back to work next week! Working from home for the first week, then into the office the week after. I convinced the doctor to sign off on letting me go back but only if I work from home the first week.
Day 26: I started working again yesterday. I’m going slow, working from home. I was able to eek out about 6 hours yesterday. It’s nice to have my brain busy again. I’m still experiencing pain on my right side. I can now pick things up off the floor, but I have to go really slow. I can’t carry laundry or pick up my cat. These abdomen stitches are still too fragile. That and I run out of energy pretty quickly. Progress comes in the tiniest little steps.
It used to be that when someone told me they were fighting or surviving cancer I could honestly and compassionately say, “I am sorry that happened to you.” But I had little understanding of the reality of it. When you meet someone surviving cancer please know it means they are attending endless medical appointments, living with pain, engulfed in bullshit bureaucracy, are taking a financial hit that is attuned to having a hurricane wipe out your home, and sorting through lots of thoughts and emotion. It’s hard and the stress is coming at us from every direction.
Day 31: My body has come a long way! I am still moving a little slow, but I can sit, stand up and climb stairs with no pain. I can pee without feeling like someone is stabbing me in the side! I can touch my toes, shave my legs, and put lotion on! I even walked my dog tonight, for the first time in more than a month!
Turns out the problem I have been having with my shoulder is because I have had to use my arms to pick myself up out of a chair or the bed. In a couple weeks I will begin to rehab it. I can’t afford to pay for a physical therapist. I’m doing it myself, at home.
In four months, while fighting cancer, I have racked up $57,386 in medical bills. This is WITH health insurance. So I get my body knocked out from under me and my families financial wellness knocked out as well. I just can’t wrap my brain around this.
Day 40: My first week back at work was kinda tough. But now I am in my second week. I’m feeling pretty good! I still can’t vacuum without pain. I can’t press my abdomen up against the kitchen sink and wash dishes. My scars are rough and a deep shade of red. I am nose deep in bills but flooded with love. I can’t believe a couple weeks ago I could not even dress myself. I am soaking up every win. Surgery also cured my anemia. I have energy. Just a few minutes ago I was outside in the freezing cold, staring up at the stars, and feeling thankful. This little life of mine has been very difficult and very magical.
In two days I’m cleared to start living in a full way again. I can start exercising, take baths, and have sex! I have this list of things to look forward to that I now have to conquer!
Surgery happens this Friday. Now there is a low hum of nervousness that constantly resonates out of my chest. It started yesterday and is so real that I can damn near touch it and see it. I wish I could make it stop. The thing that I have been […]
Uterine cancer is also called endometrial or womb cancer. People don’t talk about it enough… perhaps because it mostly happens to older women? Perhaps because women are not sharing their grief with this diagnosis? But uterine cancer can also happen to younger, body positive, fearless women like me. For example, I have a genetic syndrome. I got this shit younger than most.
Below are the signs that got me into the doctor’s office. Some of them I have had for a long time and did not know they were signs of cancer. (It’s a little like the frog in a pot of hot water analogy. I am the frog. Cancer is the HOT water. I was not dropped into the hot water. I was gently set in a nice pot of warm water. Life slowly turned the heat up on me. I stayed in the pot, blissfully unaware until it was suddenly it was painfully obvious that I am in a pot of hot water!)
I’d love it if I could help a few people get diagnosed a littler earlier and better care for their body.
- Watery blood at the end of my cycle. For me, this started a few years ago. I figured it was because I was perimenopausal. I had no clue this was a sign of an issue.
- A dramatic increase in monthly bleeding, in both the amount of blood and number of days. I had always had a rather light cycle so this one was obvious to me. This started five months ago. I was on the road for work. I was bleeding a lot. I knew I was becoming anemic from the blood loss. I spoke with my older sister to see if she could give me any insight into the possibility of this being a part of perimenopause. I did the self-remedy of taking iron.
- Bruising. This one freaked me out. I developed a large black bruise on my tummy. I knew I had not been injured so that was the last sign I could not ignore. I had other little weird bruises on my body too, like on the top of my wrist.
For women who are past menopause, I understand the number one sign of uterine cancer is that they begin to bleed, long after they had originally stopped having their monthly cycle.
I also learned doctors have a good reason to always ask you about family history when it comes to cancer. (Duh! I just never thought to ask why they always ask.)
If you have had close family members who had cancer (especially when they were young) you might want to request a genetic screening. This way you have some understanding of your risks and can be more proactive in your wellness. If you come up positive it means doctors will do actual cancer screenings on your body at a younger age and perhaps with more frequency.
My family history is a little mysterious. My mom died young. Most of the rest of my family is either scattered to the winds or so horribly repressed that they like to pretend they don’t have a body, much less illness, much less share their experience around illness.
My siblings are the exception. We talk. As much as it sucked to tell them there is a genetic issue in our bloodline, it also felt good to give them the information they may need to care for themselves.
So don’t be an ass. Live long and do good. Listen to your body. Talk with your family. Ask your doctor questions. Get screenings when possible.
Still managing to keep my head in a good place. I have these passing panicked thoughts about surgery and incisions and losing part of my body to cancer. I am getting pretty good at setting them aside. The mind is a funny thing, you can play honest […]