In February of 2020, some friends created GoFundMe and Facebook pages in order to generate support for our family. These sites would also serve as a place to post updates for those who may like to know how things are progressing. I found that sporadically posting updates helped me to process things and simply share what was on my mind. Besides, there was not much else that I could (or currently can) do that quickly passes time while recovering from chemotherapy. It was not too long before those updates were written in somewhat of a journal format. Here, most of them are compiled as a part of the broader collection of what I have written.
Day 1 of treatment went well. The most difficult part was hearing the details and signing the consent form that makes it sound like there’s practically zero benefit and I will suffer every major side effect before coming down with the Black Plague. Thankfully, a short time later my doctor saw me and reminded me of the greater plan and where today’s treatment fits in.
The basics of that plan are this: For this stage 4 cancer, chemotherapy (began today) they are using an aggressive (but likely greater side effects) protocol to begin shrinking all the peripheral sites (metastases) the cancer has spread to, and possibly the primary site taking up residence in the gallbladder and liver. In a few weeks when the intensity of the chemotherapy winds down a bit, we will likely add some radiation therapy. The doctors say they are going after this fairly aggressively because I’m young and was otherwise healthy prior to November or so.
This will go on for I believe five cycles, each using less intense chemo protocol. I have yet to consult with the radiation specialist so I cannot comment on that protocol other than beginning that does not coincide with the start of chemo.
Still, this is not at all expected to completely clear every area and put my cancer into remission. What we (and I think all stage 4 cancer patients), are really banking on are the genetic tests and highly targeted IMMUNOTHERAPY drugs that come from the Foundation 1 organization. IF my cancer cell (previously biopsied from the mass of my liver) show any “genetic tags” their labs can work with, they will be able to design my own specific drug. Genetic tags are common but not at all guaranteed as some cancers hide these well and that leaves their lab with little to work with.
Soooo…PLEASE PRAY THAT MY BIOPSIED TISSUE WILL HAVE THROWN LARGE HONKIN’ GENETIC TAGS!!
The immunotherapy shows by far the greatest chances of completely taking out the cancer sites as well as long-term outcome for those with aggressive stage 3 and 4 cancers.
Lastly, there may or may not be some type of specialized ablative surgery targeted to the primary mass. This may involved specialized technique at UPMC Pitt, out in Philly area (a newish proton technique at U Penn, or John Hopkins).
Next Monday I have my second round of chemotherapy similar to today, and Wednesday I visit a specialist at John Hopkins in Baltimore. This doctor has already communicated with my doctor in Camp Hill. But she will speak with me and personally examine and recommend any tweaks to my protocol.
Okay that was a long post, and I would much rather be writing rehab and training-related posts , but I wanted to share some of the details of DIGGING OUT for so many of you who text or call wondering how it went and what the game plan is. I genuinely appreciate the loving concern but it is eventually exhausting trying to keep up with everyone.
Please keep praying for the family and I.
Hi friends. Just wanted to give a bit of an update.
My first chemotherapy treatment was Monday. The doctor said they were giving me a strong dose to start because I need it and I’m young and strong enough to handle the side effects. Monday and Tuesday went fine and I basically operated at my pre treatment (relatively low) baseline. But Tuesday night the side effects hit.
I don’t want to get into the details of the severe dry mouth, ears ringing, and other things they said to expect. Wednesday and Thursday were much of the same, with a lot of sleeping by day. It’s like having the flu where everything you think about doing, even getting out of the recliner, is a major effort.
But with some prompting by Amy and others I did manage to get up and go for short walks outside, do light house/kitchen work, and take a few trips up and down the stairs. This type of light activity usually made me feel better.
Imagine that…the right amount of physical activity helps you feel better…
Anyway, I’m definitely hanging in there and fighting – no question. By Gods grace I can walk and read and type this week, and I’m thankful for that. I’m so thankful for Amy having such care and patience with me here, and I’m thankful for all of you who have been praying for us, supporting us financially and in countless other ways. Truly, Amy and I feel your love and care and that helps tremendously.
Monday brings my second round of chemo, which I think will be somewhat lighter. Wednesday we visit a doctor who specializes in my type of cancer at John Hopkins, to review and revise the treatment plan (if needed) with my primary oncologist in Camp Hill.
Life Slows Down
Today was a good day. It felt like a day in early January, before having any thought that this may be serious. My capacity is still quite limited. But last night I finally slept well. Today was the first day in approximately two weeks that I did not feel some type of moderate pain or discomfort or tightness. I did not feel any type of medication induced side effect; the chemotherapy plus around-the-clock Benadryl and prednisone to mitigate Monday’s allergic response.
All that can change in a matter of weeks is astounding. Today I did not struggle for a foothold simply to hang on to the day and get off the couch. We did not run to and schedule and review various tests and doctor appointments. I could focus and read and reflect.
So much has been lost. For close to thirty years I have been accustom to being strong. Mentally and physically. I was never truly elite at anything, but was always capable of just about anything. Able. Kids threw the frisbee over the neighbors fence? Let me attack that fence. I absolutely loved the years, decades, of training and serving others with those physical abilities and years of accrued experience.
The present is not like that. Not at all. There’s just not much that I can do for very long. After simple tasks and errands and appointments I need the rest as if I had a long and productive day’s labor. I rely on Amy, family, and friends for so much. Amy, once again, without hesitation, puts her life completely on hold to be there for me in every capacity. I see her especially, and all this prayer and generosity and love poured toward us as nothing less than the work of God through human hands. When I view the various support and help offered on our gofundme page, every single time I’m in tears within a matter of minutes.
Otherwise I’m doing okay. Quite honestly, I’m not the least bit angry. There are zero; no true feelings of regret or remorse or “what if.” I simply miss being active and my work. I have a lot of time (and incentive ; )) to pray. I have peace about a number of things, and so much to be thankful for. Forty three years of literally countless blessings do not just vanish. I do not believe that setbacks and pain and suffering are for nothing. I do believe there is a greater good, and I have already seen God work some spectacular resolutions and reconciliation through this.
I’m going to fight this diagnosis with all I have, of course. I’m very inexperienced as a stage 4 cancer patient, and do not know what I do not know. I understand that plenty of more rough days are to come. I’m so thankful for the team of medical professionals and modern science behind what they are doing. But ultimately when and where any ability returns or remission occurs, to God, the great physician be the Glory.
Thank you for reading and praying for the family and I.
It’s Always Something
This was a good week, overall. There were a few major Wins.
Monday was a break week from chemotherapy, which takes place in a 2-on, 1-off cycle. I had blood drawn (there’s ALWAYS at least one blood draw). Dr. Felter reviewed the results, which showed some improved markers except in the realm of red blood cells/anemia. This was low to begin with and has only dropped week to week since beginning treatment. At the advice of the specialist at John Hopkins, we scheduled a blood transfusion.
In the afternoon on Monday, Amy and I took Luna on the short drive to the Messiah College baseball game. I bundled up well although the temperature was in the 60’s. It felt wonderful to watch a baseball game, to dwell among a light crowd of normal healthy humans not focused on my diagnosis, to be out under the sun for an hour, even if wearing a hooded sweatshirt. Monday was a good day.
On Tuesday, my echocardiogram came back showing no abnormalities. This was surprising, as the CT scan taken on 1/29 showed a metasteses pressing into the right ventricle. Tuesday was a good day.
The medical appointment of the day for Wednesday was the blood transfusion. I woke before the twilight of the morning fretting and could not return to sleep. I was mostly recalling the allergic reaction to iron infusion that took place the previous Monday. The sudden bursting into a cold sweat. The swelling and violently throwing up. The EMTs doing their jobs just fine but having absolutely no clue as to my recent health history. The 3.1 mile, $1800 nauseating and ice cold ride to the emergency room facing out the back window of the ambulance. There is plenty more to complain about that day, but I think the traumatic nature of this is plenty evident. The red blood cell number drastically needs to go up, but having a reaction to an iron injection does somewhat increase the chance of having a reaction to blood transfusion. I prayed a lot that morning.
Thankfully, the transfusion went without a hitch. Once things were established and rolling, I caught up on lost sleep through the majority of it. The nurses reminded me that having flu-like symptoms after transfusion is quite normal and not serious unless there are some severe and significant complications with it. Unfortunately, I have indeed experienced nausea and severe hot and cold spells on Thursday and today (Friday). I keep the electric blanket close at hand and there have been occasions of sitting shirtless on the front porch and laying on the floor with a bag of frozen broccoli under the back of my neck.
So today I’m moving fairly little and when I do it is slow. But I have definitely noticed significant improvement in the ability to walk up the stairs or the small side hill (plyo hill) of our house without a bit of breathlessness.
Yesterday a thoughtful friend dropped off a full array of Smartwool under-clothes. These are wonderful. I don’t understand how it works but for my situation it is almost like magic as compared to standard cotton.
[Sorry if Smartwool pops up in everyone’s sidebar. Well, you will not be let down if you do go with it ; ))
Lastly, thank you again for all of the prayers and tremendous support. Just know that Amy and I feel so loved and cared for and not at all alone in this. This is invaluable. Literally priceless. I understand that not all of you ascribe to the same beliefs or go to church, but this is absolutely the church at work. The church is not a building, bricks, stained glass and nice hedges. In my position you tend to have clarity on a number of things. You just do. And it’s truly difficult for me to see it any other way.
Thank you for reading.
Tomorrow begins the second 2-week cycle of chemotherapy. At the advice of the specialist at John Hopkins, the formula changes. A third drug will be added and the two original drugs will be lowered to a small extent.
The actual treatment day is a long boring sit. I read, listen to podcasts, sometimes text, and eventually nap. After 6 – 7 hours as a patient in one large room of an oncology facility, it’s odd driving home and entering back, thankfully, into a home as a somewhat normal citizen.
Over the first two weeks of treatment, the side effects hit around 36 hours later. To this point, thankfully, they have been moderately unpleasant but not severe. I do sometimes worry about the severity of side effects to come when we add a third even stronger drug to what I’m told is already a strong mix. First there is the issue of maintaining a certain level of white and red blood cells. The chemo drugs are never a friend to these guys. The nausea, funky aftertastes, dry mouth, ear ringing, feet numbness (but wait, there’s more… that I won’t mention!! ; ) ) to this point have all been uncomfortable but manageable. How much will it increase? Are the effects cumulative over time?
So there’s a nice useless bundle of “What ifs” and “Now what’s.” Please do pray for me in the way of the actual side effects as well as simply taking it as it comes. I recently read that God gives us grace and strength for today and not for what we imagine may happen tomorrow or next Thursday.
I have always loved where it is recorded that Jesus said “…do not worry about tomorrow, for tomorrow can worry about itself. Each day has enough trouble of it’s own.”
How refreshing and honest!
Also this! After getting over the late side effects of the blood transfusion, I physically had three great days (relative to the previous 6-8 weeks). I slept well, ate well, and ventured out of the house into the sunlight, all with minimal discomfort. The “It’s Always Something” did not apply and for that I’m so thankful. I will absolutely look to these days to help carry me through any rough days to come.
Thank you for reading and praying.
Uncertainty – Clarity
Quite honestly, it was a rough week. I do not intend to share every detail of my entire journey here, but I do need to report the good with the bad.
I’m not certain exactly why I again felt more nauseous, fatigued, and flat, with the absolute opposite of an “appetite.” But I believe this is the nature of chemotherapy. It was only a few days but unfortunately some further weight loss is obvious.
It’s good for me to keep in mind that if the chemo is hard on any of my “good” cells, it more than likely is doing a number on the cancer. And that is the bottom line.
The oncology office had to shift my appointment to Tuesday due to a first-time-ever hardware malfunction in their lab. They were no happier about this than I was. At least it gave me the beautiful Monday to enjoy time with Amy and the kids outside. But it also left me with only one day of recover from chemo before the scheduled biopsy on Thursday. After chemo, the nurses always instruct you to make sure and drink a lot of fluids. For the biopsy, you’re instructed to drink nothing before the procedure. This, along with far overdone anesthesia given immediately before the biopsy, may be to blame.
The anesthesia part is my conjecture. But I spent Thursday evening and much of Friday sitting completely groggy headed with worse nausea.
And then…Covid-19. Just like you, I watch the news and hear some things, and later log onto social media for mostly entertainment, something to do, and see many more things.
I’m significantly immunocompromised and mostly confined to my living room and open spaces. Do you think that I wasn’t greatly looking forward to the March Madness Tournament? That I’m not bummed regarding my kids spring soccer season being delayed, likely for a while? When athletes that I rehab and train all fall and winter FINALLY have the opportunity to go out and compete, I love keeping up with them. It is like Christmas morning to me!
Late winter and early spring is a time to reflect and pray in the spirit of Lent. In the past I never had the extra capacity to follow these and other spring occasions to the extent I had hoped. But this year, they would help me pass some rough days!
And I’m glad.
Of course Covid-19 has become controversial. In my position, again, you have clarity. At the very least, you have to admit that things are uncertain. You want to help Bob fight? Anything that you can do, even for a little while, to help the spread of this to stop, or at least slow, is worth it when you’re in my position. For my friends and neighbors and kids who I love to see, to not bring this into our home and cause us another trip to the hospital.
I don’t know all the facts. But if you saw what my “fighter cell” numbers looked like…I’m told that for people like me that has the potential to be the last one.
Please excuse me if any of this sounds alarmist or unreasonable. It is absolutely a state of mind.
“Let your reasonableness be known to everyone. The Lord is at hand;  do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”
The 1-2 Combo; A Lament.
Hello! I’m sorry for the lack of updates.
I’ve been doing okay, usually feeling like I don’t have much important to say. This week was better than last week, but pretty much…-meh-. That’s sums up how it is so far when I’m recovering from Monday’s chemotherapy. Again, it’s allegedly a strong dose for a (somewhat) young man to fight off an aggressive cancer. It’s worth it. I’m thankful to not be flat on my back. I can take care of my own hygiene, read, and sometimes help around the house and take short walks outdoors.
People think that I was in good health and strong, key emphasis on the word was. A while before finally seeking medical help, I started to dread the twice per week workouts with a few friends, that I previously looked forward to restoring me physically and mentally. I cut work hours back 20%, then 50%, then fully. This was the state I was in even before treatment, quite diminished, puzzled, terrible results on blood profile, and yes, scared when I finally got a diagnosis.
I’m now one month into treatment, with no clear end in sight. [I meet with the specialist at Johns Hopkins on Monday morning to review a second biopsy. This, with a few other more recent tests, will hopefully provide some idea of a plan for the intermediate term.] I eat as much and often as I can without feeling miserable. I stand up (but not enough) to interrupt my nearly constant slumped chair and couch sitting in order to give my hips, spine, and shoulders, a gentle battle against gravity. I walk with Amy and Luna, and sometimes carry a single 20-lb dumbbell, alternating right and left arms in the hopes that my bony shoulders and scapula will eventually protrude less through my now oversized shirts. Sometimes when I’m not feeling good, I sit with my eyes closed, listen to the birds outside, and hope for sleep.
Make no mistake about it, the treatment emphasis for the foreseeable future will be the sucky but absolutely necessary “tear down” mode. Catabolic, for the physiology nerds. Bad cells, good cells that turn over rapidly such as the fighter immunity cells, everything must go. With all relevant markers and various concerns to think about, I care very little that I’ve began to lose hair.
Covid-19 comes along as if we didn’t have enough to deal with in an immunocompromised position. I’m not in a paranoia over this, but absolutely do need to heed the warnings and use extra precaution. So nobody comes over, and nobody leaves. Nobody leaves is a rough policy when that includes 5 active kids. We call upon local friends to do our bidding when we need something from the grocery store.
The flip side is that this social isolation would be great (?) if I could take the kids hiking, fishing, out to the soccer field and simply ship them out from here at times in order to have some quiet. It would fly if I could work from home, paint the living room, exercise, or any number of projects that need to be done around here. But there will be none of that, as this is not a wise or currently doable part of this stage of recovery. I do not feel bad about resting in any way. But I do often wish that I could do more!
I hope you knew that right now, I’m unable to ramble on in lament and then leave it hanging that way. This is simply not in my DNA; in my God-given design. It is quite literally the grace of God on me in this moment. I claim to be a realist. I have great difficulty accepting the claims of overconfident faith healers and deniers of the nature of this broken world that we live in.
But I also think that a single human life is much more than a statistic. I know better than to trust only that which is measurable, predictable, and reproducible.
I believe that the nature of God is far beyond hard science. Much about a single person is neither predictable or reproducible, much less God.
So friends, please continue to pray for the family and I, fully knowing that some prayers will be answered in the way we hoped, while others may not. In the mean time, I am praying and absolutely seeing a transition to a building up phase in the future. For some reason, this vision usually involves my bare feet being active with friends and family, in grass and in sand.
I will gladly endure the…catabolic… tests and treatments that stand between now and running around barefoot. I want to live and truly desire to give God the glory for every good thing that has came into and out of this life.
Thank you for reading.
“For as he thinks in his heart, so he is.” -Proverbs 23
Better News Than Yesterday
I feel a moderate vertigo when doctors contact me by phone or text asking “Can you meet today?” They have all been so generous and helpful. I address some of them by their first name and absolutely call them a friend. These docs have invested in me, above and beyond, in ways that I cannot begin to describe.
But based on past experience, it is hard to hear that any of them would want to meet TODAY.
At around 10:50, Dr. Azad (the specialist at Johns Hopkins), reaches out asking if we could do another video conference at noon.
“Yes, see you then.”
Dr. Azad has great bedside manner but so far has maintained a fairly flat affect. I’m sure that experience has taught her this as well. The room stopped floating when her face popped up on the screen…smiling!
She said that Mondays appointment was based on comparing a CT scan to a PET scan, which makes it difficult to compare change over time. Their team missed that I did have a CT scan in late January. Having this original report and imaging, she could glean a lot more comparing “apples to apples.”
Most of the major masses have shrunk 15 to 20%. Some of the smaller peripheral ones are now barely noticeable. Dr. Azad said that this is great progress given a month of treatment that did not begin until three weeks after the first scan.
We are grateful here, to say the least.
Thank you again for reading.
The Thick of It
This week, the days after chemotherapy were rough. The pattern of when side effects hit, when they lighten, and the intensity of some of the symptoms seem to be progressive week-to-week. Previously through the cycle, I began to feel decent on Thursday, then Friday. I wait for Friday like someone who hates their 9-5 job. This week, Friday did not come until Saturday.
The weekdays held plenty of staring out the window and trying to nap and being short with the kids during homeschool. Evenings are filled with falling half asleep trying to watch Vikings, Stranger Things, and two entire seasons of River Monsters. The doc says this is expected. I’m no expert, but I think this is at least a start of being in the thick of it.
This morning after eating a lot of protein (powder) laced baked oatmeal and feeling okay, I was itching to do…anything. I tried a little time outside with the kids, small-time bike maintenance, and some light house cleaning. It felt good to move. For a while. Maybe about 90 minutes. Then it felt really good to sit again.
The side effect are light today, and hopefully tomorrow, before going back for more on Monday. But they never fully diminish, even on better days. In reality, these “good” days and the days in the thick of it truly could be far, far worse. For this I’m truly thankful. Thinking about another week of treatment simply is not good for me. But praying is.
Gods grace is sufficient for TODAY.
It does help to remember that the other option is not okay. What else are you going to do? Roll over and let it take you? Knowing that the treatment thus far has proven to be EFFECTIVE is huge. I can eagerly take the oversized blue chair as the oncology nurses prepare the IV.
[Saying to myself.] “Don’t forget the second scan showing that most of the metastases shrunk measurably. It wasn’t long ago that you wrote about it.”
It is true that ALL of me has physically diminished 20%, and my feet are still numb, skin is dry and dark like having a summer tan, and my wedding ring slipped off my bonier finger again while doing dishes (not down the drain ; )), and…, …, But the stray cells are diminishing. The rest we can hopefully, in time, restore!
It is a difficult situation to REALLY care about something and have no control over it. But control is always elusive, unhelpful to all involved. I’ve been there plenty. And nobody can control my outcome, even from 6 feet or 6 inches away.
Gods grace and Amy’s hustle, naps, Zofran, a team of friends supporting the entire family, and a whole lot of prayer near and far will help me through the next weeks and months. We appreciate you.
Thank you for reading, family and friends.
Hi guys! There’s not much to update this week, which has been similar to the previous one.
There is a stretch of this 3-week chemotherapy cycle where I feel fairly cruddy for 10 of 12 days, knocked back into the woods just when I begin to climb out. Again, the side effects and my ability to function could be far worse and I’ve much to be thankful for. Knowing that the treatment has thus far been effective is highly encouraging.
Coronavirus? It’s probably hard to imagine that this blight has not substantially changed my daily routine. With this diagnosis came a drastic head start regarding having an uncertain future and a few dozen other major concerns that most of us now have to think about.
This virus will undoubtedly affect us all. I have concern for my family and friends catching it. I have kids with cabin fever, yearning for their friends and activities. I feel bad that Amy can’t get out for a quiet cup of coffee with friends. I feel awful for and mourn with those who will feel economic effects of this long after it has passed, and especially for those who already have lost their jobs and loved ones.
But this pandemic has had little effect on my today.
School at home is no different than any other year. Amy does the organization and brunt of the work, and now I spend some of the morning helping her. As far as visits, Zoom, Facetime and such, most of the time, I prefer they be brief and at a distance. For the most part, I want to give the other six people here what little time and attention I have in reserve.
Imagine being on self lockdown, two out of three weeks with little capacity or desire to do much of anything. You don’t even look forward to meals or snacks although great food is literally brought to your doorstep. You eat when “it’s time.” There are no quarantine hikes, no shopping, fishing or mountain bike or camping trips. There are no house projects and no productive character- or skill activities organized for the kiddos. Most evenings I usually don’t even feel like playing UNO. I sit and pray, watch TV and read, sleep and take medication.
I do not want this to come across as being in despair or upset. That’s not at all the case. Some days I carry 20 or 35lbs around the house and do some light yard work. Other days I call a 10-minute walk a “workout.” This is not me. It’s simply the state of being when in the thick of it, just trying to do what you need to do, and waiting, Lord willing, for it to pass.
Amy and I are so grateful for your care, prayer, and simply being there. It absolutely does help me to endure. So many of you generously helping my family with your time and resources has enabled us to walk through this with so much less…weight on our shoulders. The funds raised by the Go Fund Me campaign still puts us in shock, and reading over the names and comments often brings tears. This has been key for us to focus on care, rest, and healing.
Though I cannot do much, I have tried to pray for you and the ways this time is affecting us all.
“In humility value others above yourselves, not looking to your own interests but also to the interests of the others.”
-Letter of Paul to the Philipian church
Not Knowing – Knowing
Every third Sunday is like the Feast Before the Fight. That’s just a bit dramatic ; ) But that’s when I feel the best before going in for treatment the next morning. I do end up eating a lot for dinner, then trying to eat a little more. Historically, this is the last time that things will taste somewhat normal for at least two weeks.
As of right now, the #helpbobfight Go Fund Me Fundraiser (GoFundMe.com) sits at $99,000.
With some people and families sending through the mail to our home or Full Reps Training Center, the total is already above the goal of $100,000.
This still has not sunk in. I look through the list of donors online and the stack of cards in my desk, and tears. This generous sacrifice …From that client, friend? …When it’s been so long? …From so far away? …That much? …As a friend of my parents? …A friend of a mutual friend?
… … Yeah. Tears happen a lot when I view the donor page.
And you handful of Anonymous making huge donations, I have my suspicions. The next time that I see you in person, I WILL give you an obvious and awkward eye wink. ; )
Meanwhile, the scheduled weekly appointments and diagnostic studies rolled on. A few “bonus” appointments, fun things like a blood transfusion, a second biopsy, and dealing with allergic reaction and other complications popped up. Medical bills, explanation of benefits and authorizations for upcoming procedures and those from 6 weeks ago continued to arrive in the mail almost daily. Ongoing financial support arrived online and in the mail as well.
Also meanwhile…I still don’t know exactly how long current treatment will continue, if and when the protocol may change, or how many imaging studies I will need, much less the actual expenses to come. I do not yet know when or to what extent I can return to work.
But I do know a few things. All of them, I’m told, are major factors in achieving my best medical outcome.
-Through this diagnosis and nine weeks of treatment so far, I’m still physically in the “tearing down” stage. But I’ve grown substantially mentally and spiritually.
-I do not have to fret about sitting around like an old man, missing work, needing Amy to wait on me, or having to lean on so many others to keep the family rolling. Instead, I can rephrase all that to resting, healing, allowing a network of support to lovingly lift us up when we need it.
-Lastly, I know that I do not have to worry about the long term. This is a tuff one for me. God has provided. Even when, especially when you’re knocked down a few (dozen) pegs. It will not be an easy path. But how could it be more obvious, blockhead? [Talking to myself here haha.]
Thank you for your support. You absolutely help me put up a far better fight than I could ever do on my own, or even imagine.
Back to chemo treatment weeks. The matters listed below are expected, so I’m told. The cosmetic stuff is supposedly temporary, and -should- lift over the course of months to a year following treatment. Those are absolutely small potatoes as compared to other factors.
Some friends and family seek to understand. Why does that happen? In what way is it hard to maintain weight? “How can I help?” “To manage the X, did you try Y?”
This is not at all to make you feel bad, to force some kind of lesson or put things in perspective. Please know that for a few reasons, laying words down on some of the current state of affairs is valuable to me.
For a few days after each treatment, the stuff literally comes out of my tear ducts in the form of those fine morning Mr. Sandman eye crystal that I have not had since childhood. I have recently Q-tipped my ears and now weekly discover what appears somewhat as “wax,” though I have not been out in the dust. What I observe is different, less solid. My face and hands appear slightly more “tan” each week, although I have spent very little time in the sun. My skin is constantly dry and hair frizzled like a different composure.
Getting enough fluids and food is a chore right when I need it most. Everything tastes contaminated and even slightly sweet items taste plain awful. A bite of ice cream, even the best of the best (Brusters) gives me the “first ever shot of whisky” face. X [
This changes. What is slightly good or even tolerable weeks ago may suddenly become gross. We stock up on a food or drink, then it turns on me. “Hello darkness my good friend.” It’s like feeding a toddler. ; ) Amy says this reminds her of every first and second trimester.
Eating too little or often gives the “low blood sugar” feeling. The real frailty and weakness acutely worsens. Especially in the evenings, this also increases the nausea and causes “brain fog.” I notice myself thinking and speaking at a different tone and pace, like split personality.
When I do manage something substantial (like an actual meal that includes meat and veggies) while under the influence of recent chemo, I feel stuffed. More veggies hold little calories, which I need, and seem to take 12 hours to move past my trachea. The digestive system feels inert. Everything feels inert. The nick in my hand that occurred while fixing a kitchen cabinet six weeks ago still hasn’t healed completely over.
It’s mostly fairly acute, as in, I do start to come out of this by the weekend and in my weeks off treatment. And Lord willing there will be a longer-term recovery, rebuilding phase!