Disagreeing with doctors

People disagree, it happens all the time. What about when it really matters? What about when it is about you and you aren’t a medical professional but you have a very strong opinion about what should happen and why?

I didn’t want cancer. Didn’t want any part of it at all. My opinion and feelings about this didn’t matter, not one little bit. I did know that early diagnosis played a big part in survival rates. Survival is the goal.

I didn’t want to have chemo. The pathology on my lymph nodes showed that I needed chemotherapy, I agreed to do it. When was the first disagreement with a doctor. It was very important to me to finish chemo in 2018. This was a purely psychological desire, to end it in 2018 to start 2019 clean so to speak.

The chemotherapy I had was once every 21 days. That would put my last infusion on Jan 4. This is why I felt it was ok to move it. The second one was moved up three days for Thanksgiving. Ok, that puts us at Jan 1 move it up three days and voila! it is December 29, 2018. It got weird– it is ok to move infusions up for a national holiday, but not on a patient’s whim.

Ok, she didn’t say it in those words. I might have been mid internal chemo tantrum when processing this.

I kept pleading my case, why it was important to me, I was tolerating the meds pretty well, you know, considering. Why not get it over with sooner rather than later?

We met in the middle, but only because I stood my ground and kept proposing solutions. Instead of another three day jump, how about moving each one up two days. Of course, my blood work would always be the deciding factor if this was a reasonable course of action for me. Thankfully my blood cooperated and my last infusion was in 2018. 2019 was chemo free!

My surgeon wanted me to be at a certain level of health before my third surgery. My opinion was to get to it sooner rather than later, too. That was my basic MO when it came to anything pertaining to cancer, let’s get it all over with sooner rather than later.

She didn’t want to operate until I met certain milestones: no pain, good blood work, decent energy level, normal EKG, among other things. I failed miserably at the no pain piece and the infection causing the pain made the blood work fail, it took a pretty big chunk of my energy level, too. Hard no.

She wasn’t fooled by me faking it. I pinched my cheeks to look a little rosy. I slammed a venti coffee right before the appointment. My first cup in almost a decade, the caffeine was effective in boosting my energy. She, being a trained professional, was not fooled by my sadly weak attempts to fool her and surgery was not scheduled.

The reason I even made the attempt to look healthier is that I was running out of short term disability and that was causing a bit of panic. She told me that everything was going to be ok, just let things heal, get some rest and let things unfold they way they were supposed to. She stood firmly on no surgery until the criteria was met. She also told me to see an ENT.

My ENT fixed me. I got some sleep. My blood work returned to normal. My surgeon scheduled the surgery without hesitation. Panic about short term disability receded a little. Everything worked out very nicely, you know…considering.

There will be times you disagree with your doctor. There are times where doctors and I will disagree, even now, and we have to have a meeting of the minds and I either go their way, my way or a compromise. The important thing is that we trust each other to have open dialog and when we come to agreement we both follow through. It is much easier to advocate for yourself if you follow those ground rules.

All these bills

One thing you can count on with a critical illness is a sudden influx of postal mail. You will get bills, statements and explanation of benefits. Some of the letters will be very very thick and when you go through them it will be eye opening.

My oldest daughter was born with shoulder dystocia when I was a post-doc. These bills eclipsed the medical correspondence from childbirth. She is completely fine today, no physical remnants from her birth are visible today at all. We received bills from the orthopedic, physical therapy, and hospital. After two months of medical appointments we paid them all gladly. There is something about paying off your kids medical bills that makes you feel like you didn’t invite bad karma on her or the family.

My youngest daughter was born with hip dysplasia when I was laid off. We found out she was coming two weeks after being laid off, that’ll take the wind right out of your sails. She, too, is completely fine today despite being born on the way to the hospital with her very special hips. She was a happy healthy baby in a harness to train her hips for about seven months.

Seven months is a long time to accumulate medical correspondence. These bills were paid off both because of the karma idea and because of gratitude. Going to Cincinnati Children’s Hospital at least once a week for seven months gives you a tremendous sense of gratitude that you have three healthy children.

The first bill for this breast cancer journey was for the diagnostic mammogram. Interestingly, the first mammogram was fully covered, the second required a bit of money. The flexible spending account is there for precisely this reason, swiped it gratefully.

The next few bills culminated with the mastectomy. Wow, they were thick, detailed and with a lot of numbers to the left of the decimal. Comparing those bills with the explanation of benefits made for interesting reading. Being critically ill is expensive, thank goodness that my insurance was what it was, otherwise those bills would have been wholly for me as they stood.

That was the end of the flexible spending account for that year.

I received counseling for chemotherapy. There was the medical counseling as well as financial counseling. They explained what insurance covered, what it didn’t, what was marked down and what was my responsibility, in theory. The theory changes depending on my tolerance for chemotherapy and how the insurance company processes things based on the hospital coding. It was a best guess and it was pretty substantial and the flex account was already depleted.

Thankfully the hospital erred. They over estimated my contribution. The reverse happened with the surgeon, what I thought was done was not quite done yet. Apparently medical billing is challenging with so many parties involved.

That is what happens with the bills, you get them grossly overestimated and if you pay the overestimation, they refund you eventually. If they underestimated and you owe some more, they bill you for it immediately. Interesting how that works, right?

If your illness carries over the year, all of the copays, out of pocket max, deductibles etc restart. My doctors tried very hard to get as much in one calendar year as was healthy for me as possible. If you play video games it was a lot like the bills respawned at full health with the new year.

I am paying the bills dutifully and gratefully. Seriously, not inviting bad karma and even more seriously I am grateful for the outcome and my health I am equally grateful that I am the one paying them instead of my family after me.

I have saved the itemized hospital bills and the chemotherapy bills, I keep them in my breast cancer binder as a reminder to be grateful and not to take my health for granted.

I am hoping that this year is that last year for the big bills from big events with breast cancer. Here’s hoping, equally strong, that you can manage all of your bills, just remember to pay them with gratitude knowing that you have your health!

Waiting, waiting, waiting

I am not known for my patience, this is a virtue I do not possess. I have been known to hit send on an important email and call the recipient in that moment to see if they got it and what they thought about it. I have been known to send a package to someone and track it, let’s be honest, stalk it, until it is delivered. Amazon Prime will always have a place in my heart for enabling my inner stalker.

First, there is waiting for the initial mammogram results. That was about three weeks for me. Odds are on your side that everything will be fine. 1 in 8 women will develop breast cancer in their lifetime. I read that as 7 don’t, woohoo!

No waiting on the diagnostic mammogram, they told me right away that I would need a biopsy and made it happen.

Biopsy results take one week. Waiting a full seven days. Or 168 hours. In theory, 56 of those hours are spent sleeping, I assure you, they were not. It is a long time to wait in any unit of measure. Biopsy results equal one unbelievably long week.

Surgery was scheduled two weeks from biopsy results. These two weeks went in the blink of an eye. There is so much to prepare for and nowhere near enough time, energy, organization or patience to get it all done. The big things are helping kids through this, dealing with the leave team at work and making sure all insurance items are up to date and good to go. There are so many other things, looking back it is funny how some things became a priority while others weren’t on my radar. I am thinking it is all just a coping mechanism, there is a lot to process and even more to do.

Pathology results from surgery take a week. This determines the next steps, nothing, chemo, radiation, or both. Healing from surgery and processing that you didn’t get enough done in the previous two weeks take up a lot of bandwidth during this time. Buttoning shirts covers a lot of the time, too. This time sleep happens, healing has a way of demanding it. It still takes a week to find out if there are next steps or not, but it isn’t at the same level as biopsy results, maybe it’s the post surgery meds.

Surgery to get a port put in place was scheduled for two weeks from pathology results. Healing and still adjusting to the new normal fill the time.

The first chemo infusion was one week after port surgery. Each subsequent infusion was 19 days later.

Surgery was scheduled 55 days after the last infusion. Scheduled is not quite right, I had to heal enough from chemo, there was a lot of what was an indeterminate period of time devoted to that healing. Plus, there was unexpected time devoted to strep and flu, yay. Life had a way of keeping us busy, too busy, to fuss and fret over waiting this time.

Thirty four days after surgery was scheduled to be my first day back. There was so much to do and so little time to do it all. Buying new clothes was not a fun experience for me, I hadn’t adjusted to my new body, still haven’t, honestly. Looking in the mirror was extremely difficult, it’s not as difficult now. There are days I expect to see the face and body I did before this all began. It doesn’t exist anymore, for good reason, it seems like a mourning period.

I keep thinking that the return to work somehow marked the end to all of it and everything would feel normal again. It was the end of a chapter to this journey, but it isn’t over yet, I accept that.

There was a lot of waiting, still is a lot of waiting, it’s not so bad these days. I would still dearly love a solution for dread build up to seeing doctors. On the other hand, though, I don’t stalk packages as much anymore and I count to ten most times before calling about an email I just sent, I am sure that Jabber doesn’t count against me…

https://www.supportful.com/survivorsherpa

Blank Page Nerves

I have never liked to write. I have always preferred to be face to face when sharing information, not in writing. I was the kid in class given a 1000 word assignment and 950 words would be alright, the last 50 would be the word ‘very’ everywhere it could pass. Someone suggested years and years ago that it might be a blank page causing my ill ease, if I were to edit something it might make it easier. Easier–yes, easy–no.

The whole concept of cancer was essentially a blank page for me. There had been no diagnosis of cancer in my immediate circle of family and friends. A grandparent and far away cousin had died due to cancer when I was little, later in life friend’s parents had cancer, no direct connection to everyday life. Not quite a blank slate, but close enough.

It may be tempting to broadly Google symptoms and diseases. I do not recommend it. Specific questions maybe, the more specific the better. Otherwise the information can be overwhelming and most often pretty bleak. Since the internet can be a dark place I went to a bookstore and a library for information.

I judged the books by their covers and the titles and was overwhelmed. I used my Google strategy, be as specific about what I wanted as possible. I wanted positive books with actionable advice. For example, everyone says to reduce stress, great, how? One book said to take up meditation to help reduce stress and to use melatonin to help get to sleep to help reduce stress. Here is a good set of tips for meditation: https://zenhabits.net/meditation-guide/ .

Meditation has never interested me. I like group activities, meditation isn’t really a group activity. Meditation seemed like it was trying to create the ultimate blank page in my mind. I mentioned that blank pages are their own source of stress, this seemed like a pretty rough spiral to be in. I tried to meditate for two minutes the first time.

After diagnosis the quiet, alone times were by far the roughest. Alone with my thoughts is when I would go to some dark places. Imagining all sorts of terrible things happening. Meditation is quiet, alone time. But only for two minutes. I had help through work, we have access to Whil. They have programs for people who have never meditated and start at two minutes. I learned to meditate.

I actually like meditating now. Learning to meditate made the quiet, alone times much more palatable, even a little enjoyable. Oddly, a blank page no longer causes me stress. I am not sure that the two are connected, I am not sure that they are not connected either.

The best evidence of this is a WordPress blog opens as a blank page. It doesn’t cause me any stress or nervousness and I don’t have to edit one to make another one. I won’t make it to 1000 words today, thankfully there was no assignment to do so or you would have read ‘very’ as every other word.

If you have access to Whil, give it a try, if not, there are good resources online for free. Trying to calm your mind in the middle of a cancer tornado while on the cancer runaway train is difficult. I would imagine being able to meditate prior to a critical illness would prove invaluable. Reducing stress can help to reduce the likelihood of ever having a critical illnesses, if you learn today, maybe you will never have a critical illness.

These are interesting side effects, I guess since they are positive they are benefits. There are not a lot of benefits to cancer, but the ones that come are pretty huge. Take a few minutes to learn to meditate, practice often to reduce your stress and never let a blank page get you down.

Milestones

There are distinct periods in life, the change is often marked by a specific event, a milestone. My first six distinct periods are measured by which school I was in, the next 9 are about our kids and moves and jobs. We figured instead of measuring distinction in our lives based on our experiences, it would all be about the kids from now on.

Unfortunately, cancer entered our lives.

For the past 14 months the milestones are all about cancer. Something odd, Pre-diagnosis, pre-confirmation, pre surgery, post surgery, pre chemo, during chemo, post chemo, pre next surgery, post next surgery, you see the pattern I am sure.

When something comes up I place it on the timeline of treatment. This is fairly common. My 2018 birthday was during the dog days of the second chemo infusion. Halloween was two days before the first chemo infusion. Not that my first chemo was two days after Halloween, or the second set of dog days were around my birthday, it is interesting how it is framed in my head.

When my husband and I are trying to figure out when something happened during the girls’ school year, we place it on the cancer timeline.

Each period is bookended by a specific set of experiences. Pre surgery is before the first surgery which was the mastectomy, but after diagnosis, you could call it the knowing but waiting period. While I am still struggling with holes in my memory and word accessibility, those dates and milestones are indelible and easily recalled. The granularity is a little frustrating, given time I am sure it will fade into a wider angle view.

There are some milestones I celebrate sort of. I think they should be, but I am not sure how. For example, the mastectomy removed all of the organized cancer. That is a very good thing, clear date, slight celebration on the anniversary of surgery. Chemo killed all of the unorganized cancer. That, too, is a very good thing. Chemo is brutal so no matter what it did, the fact that it ended should be celebrated. I haven’t gotten to that anniversary yet.

That anniversary doesn’t seem like a single day, like, say, that of the last treatment, because there was the recovery time and the dog days post infusion. That didn’t have a distinct end because of the salivary gland infection which blurred all healing. At about that time we started getting the flu and strep in our house. No two people had an illness at the same time, and no one person had two illnesses at the same time. CVS LOVED us during this time, we almost had a line created for us. Six antibiotic prescriptions, five steroid prescriptions, three tamiflu prescriptions, 1 xofluza prescription. I was expecting them to call the first week we didn’t drop off a prescription to see if we were ok. They didn’t, I still hold that against them.

We will celebrate, make no mistake about that. I am grateful to be healthy and getting healthier daily. I am looking forward to the milestone being pre cancer and post cancer only, where we move to a helicopter view instead of the microscopic view. Time heals, it really does.

All of these milestones are our construct, should you experience something like this, you will construct your own timeline. Make sure you pick milestones to celebrate not just to measure. Making each one is a good feeling. Now when I visit friends going through this I ask them what their last milestone was. They light up and tell me what they just made it through, what is over, what has finished, it is a much better conversation than asking them what is next because that just brings out the dread. Try it, you will see the difference a milestone makes.

Biopsy: husband view

Friday afternoon of Labor Day weekend we knew that Tuesday was going to be a biopsy. A breast biopsy. A biopsy is a procedure to take pieces of a tumor to determine if it is cancerous or not. That was a three day weekend. The longest and fastest three day weekend ever.

Tuesday morning came.

My husband drove to the hospital. We had driven past it a multitude of times, always remarking how pretty and pastoral and serene it seemed. This was the first time going in. He drove in and asked where we should park. Then we both saw it, there was a building with a huge sign reading Breast and GYN Cancer Pavilion. We looked at each other and parked in front of that building. He joked that this was the worst game of Let’s Make a Deal ever and would like to choose a different building, he knows what is in that one.

He doesn’t remember the long pause walking in like I do, we just walked in. He remembers the lady giving us water and telling us where to go, but not as warmly as I do. He also says the elevators are freakishly fast, even to this day. He also liked that the doctor talked to us for a while before the exam.

This is the point where our accounts differ considerably.

We went to the room to get the biopsy. According to him we sat there for about a year waiting for her to come back. The room was small and uncomfortable and there was a lot of equipment in it, he wondered if it was a storage room with a dual purpose.

The doctor came back in and started putting things together explaining as she went. He says the doctor pulled out a huge needle, the biggest he had ever seen. He felt when a needle is that size it should be called a pipe, that it is no longer a needle at all. They jammed it in me about 8-10 inches and collected samples.

It sounded like a sewing machine, but different. They collected samples in jars that were carefully sealed and labeled. They did this in quite a few places. Showed him on the ultrasound where she was sampling and tagging. She was putting tags on the tumors for a future MRI so that they would be able to find the spot again because there was going to be swelling and inflammation that could make it difficult to find later.

She explained to him that this was all going to get her the best information for diagnosis and the more accurate the diagnosis, the better the treatment plan. She assured him that this was caught early. She reassured him that she knew what she was doing and that he could trust her that they were going to be working together to get through this.

After about a day of sampling she was finally done. He remembers looking at me and ‘waking me up’ so that we could go back to the original exam room and finally get out of this smothering and small room. That is when he noticed that his hands were sweating profusely from holding mine during the procedure.

Back in the exam room he helped me change back into regular clothing. He was sure all of the bruising was going to be painful and asked the doctor for advice on what to do about it. She handed him the cold pack to be used later if we can’t get to ice and a few packages of over the counter pain pills. He missed that she had given me an ice pack already and showed me how to place it for maximum effect. He doesn’t really remember anything between that conversation and being back in the car.

He recalls asking if I wanted lunch as he looked at the clock in the car, it was reading 9:25 am. He looked at me and said that it was still too early for lunch. He said that he was surprised since we had waited so long in every room—and what did I think about the needle? He was taken a little aback by me not recalling any of that, he was a little worried. He told me all about it, physical details, doctor commentary and his thoughts and feelings at the time, all of it.

Each time he tells the story we waited a little bit longer and the needle is a little bit bigger and it went a little bit deeper and it look even more time. By the time we have grandchildren it is going to be a heck of a tale.

He isn’t normally like that. He typically tells a story pretty much the same each time, except this one. He typically tells just the observable facts, not his thoughts or feelings on the matter, except this one. It is strange that this story gets a little more colorful each time he tells it, not much, just a little more colorful. He does that with the traumatic events in our daughters’ lives as well, thankfully they are few and far between. He only has a handful of experiences where the stories grow just a little bit each time he tells them, almost like he is reliving it and somehow exaggerating it makes it easier.

It is easy to forget that the people who love and live with the person with cancer aren’t just bystanders at the scene– they are in it too, in a very real way. It is taking a toll on them as well. There are resources for caregivers and family as well, not as abundantly as you would hope, but they exist and are growing.

I imagine any critical illness takes its toll on all those who love the person with the diagnosis. When describing this I say that cancer entered our family, our family dealt with cancer. That is why we want to create Survivor Sherpa, to help carry the load for the family along with the person in treatment so they can deal with healing from cancer so they can all thrive after treatment.

https://www.supportful.com/survivorsherpa

Kindness matters

There are a lot of trips to the doctor to get to a cancer diagnosis, there are exponentially more after a cancer diagnosis. A lot seems like an understatement. My first trip to the Breast and GYN cancer center at Woman’s Hospital was by far the worst. I guess the reason for that is the word cancer is building size, pretty huge, and hard to be in denial as to why you are there. It is in your face and you are about to enter.

The first time was for the biopsy. My doctor took me in first thing in the morning after a holiday weekend. We were early, I imagine that everyone is early for something like this. I looked at the building with it’s intense labeling and stopped in my tracks. My husband was patient and kind as he waited. He gently reminded me that we were better off knowing than we ever would be wondering and that early diagnosis is key.

We walked in and there is a greeter at the entrance. She is one of the brightest, kindest, smiliest people you would ever meet. my money is that it is all genuine. She knew we were there for the first time. I imagine there is a recognizable deer in the headlights look accompanied by white knuckled hand holding. She told us the floor and which elevators to take and asked us to stop by when we left. She even offered us each a bottle of water.

We went to the elevator. I am sure these elevators are the fastest elevators in the world. Seriously, no sooner had we pressed the button than the doors opened. I was looking for any excuse to leave, a slow elevator would have done the trick. As silly as it sounds, a fast elevator is a true kindness, there was no time to cut and run.

We checked in at the doctor’s office. They didn’t have me on the schedule but didn’t let me know, that would have been my sign to leave for sure. They took both me and my husband to an exam room. No weigh in, nice! No need to change into an exam gown, the doctor wanted to talk with us first. All very kind, very intentional acts of kindness.

Now, that may not mean a lot to many folks out there, but to meet a doctor fully clothed to talk first is so much kinder than to meet them for the first time in a gown all naked underneath sitting on an exam table. When she came in we just talked. She talked us through the exam process which could lead to a biopsy. She explained that the medical radiologist let her know what his findings were and that biopsy was most likely going to happen. She talked us through a biopsy, how it would either be in the office or downstairs in imagining, either way it would be today. Then stopped. Not taking us past the next step was a true kindness, no need to borrow worry.

She did the exam after I changed into a gown and walked us to the room for the biopsy herself. The trip must have been 15 steps at most, she reminded us about what the biopsy was going to entail. Opened the door and said she would be right back.

Honestly, if she hadn’t been right back, I bet I would have set a hospital record for how fast I got out of there. The next part is a blur. Truly, there isn’t really anything that I recall from that part of things. I held on to a penny, there was a crack in the wall I stared at the whole time. My husband said the doctor did commentary of what was happening during the process, stopped often for questions and made sure everything was ok. I had gone to my ‘not here’ place, not my happy place, why ruin that? My husband needed the commentary to keep from obsessing over what was happening, knowing and doing what he needed at that time was a great kindness.

She walked us back to the exam room when we were done and said she would be right back. She was right back with a cold pack for later, and ice pack for now and a few packets of over the counter pain meds. She talked us through the next step- waiting for results. This was the part that was not at all kind. It takes one week to get results. One week is a very long time to wait.

We stopped by the greeter before leaving as promised, she gave us two more bottles of water, apologized for it not being something stronger. She told us this was the best place to be for something like this and it was all going to be ok and that she would pray for us and our family. I believe her. I believe she did.

Each time we go to the hospital, and we go a lot, she is every bit as warm, welcoming and kind. It is a true kindness to see her when I go. She is so in tune to all who come that she can pick out when I am going to see the doctor or do something else. When I go to see the doctor she takes my hand and tells me it’s going to be ok, blood draws she gives me a bottle of water, imaging she gives me a recipe for the season and so on. Her kindness is infinite and is infinitely appreciated.

The thing I take away from all of this is that each act of kindness is amplified by the situation. When nothing is going on I thank people sincerely for their kindness. When everything is going on, hugs and tears may be in order for exactly the same action. It is interesting how much a very simple act of kindness can mean in an awful situation. One of my favorite hashtags is #choosekindness. Woman’s Baton Rouge definitely chooses kindness and acts accordingly because they know how much it means.

Clearing your personal cache

Sometimes I get stuck with a thought. Really, really stuck. I never consider myself stuck if it is a good thought, only when they are not so good am I stuck. I really only know one way to get un-stuck, or get out of my own head, or really just to clear my cache, you know, what you have to do to your devices when they get bogged down and slow and get stuck.

There are times when life just gets me down, usually when I haven’t been sleeping well. I just get down in the dumps. My first choice is to get enough sleep, good rejuvenating sleep, sometimes that isn’t an option with everything that is going on in life or in my head. Sometimes the only thing I can do is to volunteer for a few hours.

Volunteerism is the one thing that I can count on where I get out of my own head and do something good for someone else. It is energizing and revitalizing and there are so many places in need of volunteers it’s hard to choose just one to do. Those hours spent volunteering are an excellent way to clear the cache and really get un-stuck.

Most recently my husband, friend and I volunteered at the local foodbank warehouse. You have to sort all of the big palette boxes of mixed food into big palette boxes of single food categories, like canned fruit, dried pasta, juice and so on. Sorting goes on for a while, grocery stores are pretty generous.

Once the sorting is complete, smaller boxes of the food category need to be made. They are a specific weight. All you have to do is count the cans going in, or you can weigh each box individually. Either way you end up with a 40 pound box that goes on a categorized palette ready for shipment to a food bank.

It’s nice to chat with the person working close to you, sometimes it’s someone you know, sometimes it isn’t. I worked next to a person who was there on court ordered community service. He shared his story, I empathized with him. He told me what his plans were and his hopes for the future. They were very modest and he was very positive about his chosen path. I hope that it all comes to fruition for him.

I chatted with another person there who volunteered because she wanted to do something to pay back the help they provided her when she was down on her luck due to some pretty terrible circumstances. She was so open about what she had been through. I felt very bad for her and so amazed by how she managed to get through it all. She could be a role model for getting through very rough patches.

She asked me why I was there, I chickened out and said I was there through my employer, even pointed to my shirt. It was the truth, but not the whole truth. I needed to be there to do something outside myself, that was wholly positive, was a cause I believed in and benefited someone else in order to clear my cache.

It seemed so shallow compared to what they were going through. I stopped judging myself, gathered my courage and told her. I told her that I really needed to volunteer because it gets me out of my head. She paused and looked at me very thoughtfully and said she experienced the same thing. Every now and then she would get unhappy, not know why, and then come do some work at the foodbank and feel better. She thought that her unhappiness was a sign she was taking her new life for granted and needed to be reminded where she could still be if things were different.

She thought it was just her. I thought it was just me. Interesting how that works out!

I know a lot of people that exercise to clear their heads, immerse themselves in a hobby, commune with nature, take a long hot bath or some such thing. Sometimes those work for me, but I can count on volunteering to clear my cache every single time.

Try https://www.volunteermatch.org/ to find a place that has a mission you can get behind and give them a few hours of your time, you will get way more out of it than you put in.

Waiting for last chemo

Chemotherapy is awful. Don’t get me wrong, I am cancer free today because of chemotherapy. I wouldn’t wish chemotherapy on anyone. I pray that chemotherapy becomes something less awful in my daughter’s lifetime and that they never ever need it because it is awful.

Today I was reminded of the terrible time between the third and fourth infusion and it still chokes me up, almost a year later to the day. It took a little bit of personal prodding and one of my favorite tricks, the ten minute trick, to actually write about it. The trick where you do something you don’t want to for ten minutes and if you still don’t want to after time is up just stop. I have yet to stop, it’s a good trick to get yourself to do something you are procrastinating about. I did it for this, remembering that time is difficult almost like reliving it because it is so clear and it was terrible.

The infusions were worse each time. If they all stayed like the first one it would not have been pleasant, but it would have been totally manageable. Not fun, but manageable. The second was worse than the first, the third was worse than the second. That made me dread the fourth at an epic level.

For nineteen days I would wake up dreading the fourth treatment. I would force myself to repeat a mantra “the next infusion is the last one” every single time I would start to feel the dread coming on. It worked well enough. I can honestly tell you the last few days the mantra was close to being every other thought. Even on Christmas.

We were wrapping our youngest daughter’s bicycle on Christmas Eve, very Arthur Christmas style, it was fun. There was absolutely no way she would not know this was a bicycle by the way we wrapped it, we even did the ribbon to her bed room, so much fun. My husband would remind me that the next infusion was the last one each time he saw the fun or the smile fade while we were wrapping it. He could see every time I would think about it. It was palpable.

We got the girls something they wanted, something they need, something to wear and something to read, and some fun stuffed stockings. We took turns opening presents, it was great, special and all about Christmas. Except when that feeling would come. My husband would squeeze my hand and smile when he caught my eye. The message was clear, the next one is the last one.

Finally the day arrived. I went to get my blood drawn and played Switch with my youngest as we waited for the results and the appointment with the doctor. My husband and I went in and she said it all looked good and congratulated me since this would be the last one. The tension from my shoulders evaporated. I was afraid that she was going to tell me my blood work was such that I couldn’t get it that day- prolonging the dread or that I was going need additional infusions- again prolonging the dread. Neither of those happened. I was so relieved. I could truly feel all of the tension draining away.

I knew this was going to be the worst one, with the new baseline being the third one. I did all of the things that I knew would help–hydrate, take claritin, bring my frozen water bottles, comfort pillow and many other things. This was the last one.

The topical numbing medicine did its job and the port worked just fine. The steroids are a rush, too bad they do bad things to your bones. The infusion went off without a hitch, nothing untoward happened at all. Played Switch, Mario Party is a lot of fun. We watched another part of the same movie trying to finish it since we weren’t coming back, still don’t know how it ended. When the lady with the drinks and snacks came by I asked for ginger ale and nutter butters as a special treat for this special occasion. It took a little less than three hours. Then it was over.

As we packed our stuff up the nurses kind of hung out, which was weird. They normally put an auto-dosing-blinking-thing somewhere on me and said goodbye. This time they lingered. We walked toward the exit to see the intake ladies and other nurses and the phlebotomist standing by a bell next to the door. They were making a line to celebrate my last infusion by ringing a bell. I rang it pretty hard being all hopped up on steroids and they gave me a little one to take home, I am much more gentle with that one. It was such a sweet and meaningful little ceremony. Then it, too, was over.

This was a very exciting day, all the the dread leading up to the fourth infusion was over, the fourth infusion itself was over, infusions in general were over. I was a little worried about the dog days approaching, but I said out loud they they will be the last ones. It wasn’t a mantra, that was a fact and it was exciting.

I went to sleep easily that night despite the steroids and woke up the next day without the dread. Even though I knew what was coming, not exactly how bad, or for exactly how long I knew it was going to be the last time for all of it.

The time between the third and fourth treatments was over and a great relief took the place of the dread. The build up was terrible, the fear that there might be more or that it might not happen on time was as close to unbearable as it could have gotten. It was over and the relief was amazing. I rode that feeling for as long as I could and was grateful for every minute of it.

Play today pay tomorrow

Normal daily life. What exactly is normal daily life? I know it when I don’t have it, and don’t necessarily recognize it when I do. During chemo I prayed fervently that this would never become normal. During the normal times I know that I am nowhere near grateful enough.

It takes longer for me to bounce back than it ever has in my life. I had strep throat a few months ago and it took almost a month to feel like I did pre-strep again. I had surgery about a month ago and still don’t feel like my pre-surgery self yet. That is all I am shooting for, just to feel like I did pre issue.

On top of all that are regular activities, girl scouts, soccer, band performances, 4-H, holidays. Each time I participate I go in with the attitude that this is going to be fine. Some of the time it is fine. Some of the time I have to pay for the extra activity, especially now post surgery.

It seems that a person can become hypersensitive to any changes in their body post critical illness. I am that person. I consider things now at a level I never did before. Should I go to the mall with a crowd where people are close and maybe catch something? When I go to a school concert for the girls, where should I sit to not get coughed and sneezed on? Is this sore in my mouth from eating food too hot last night or are the chemo sores coming back?

Should we make a quick run to the grocery store before the school concert and then out for ice cream to celebrate after? Or will that be too much? When is it too much? Why is it too much? That was stuff I did 16 months ago, why is it too much today?

Chemo takes a toll for a while, I will not Google to find how long or why, it just continues to take its toll for a while. I hear radiation is worse. The books I have say it is different for everyone because it depends on your general health and fitness going in, what type of cancer and stage it was in, what medications were given, how long they were taken and so on and so forth.

As an example Wednesday we went to a movie, out to lunch and a doctor’s appointment and Thursday was Thanksgiving where I spent most of the day in the kitchen. Friday and Saturday my body said rest by being nauseous all day, I took it easy. Sunday was getting the girls ready to go back to school after a week off. Monday my body said rest, same nausea, I took it a little easier on my own, everyone else returned to normal activity.

I keep thinking that eleven months out from the last chemo infusion I should be back to my old self. Maybe surgery is harder on me than I think it should be. I would like normal to include working full time and the kids activities on weeknights and fun things on weekends every week. Each day is better than the last, but there are days where I wish it were much better. I am trying not to be greedy, but I would like to do more without having to pay for it so acutely at times.

I take vitamins and supplements daily, drink plenty of water, am strict keto and get in moderate exercise most days and pay attention to what helps and what drains and have lost weight. I can’t help but think that should be enough to get back to pre cancer level of activity or beyond, I am getting there a little bit each day. I sincerely hope that you find what works for you and that you don’t have to pay too much for what seems like normal daily activity.