On Friday, 11 October, I returned home from my latest stay in Walter Reed’s finest.
I am back in my own castle and getting additional nutrition from a home TPN regime of 1800 calories that my wife hooks up to a port in my right bicep every afternoon that pumps until the next morning, 12-14 hours later.
I augment the TPN with an additional 200-400 calories that I eat on my own. Usually, I meet my intake goal by consuming calorie dense soups or mash potatoes (bring on the butter and heavy cream) or protein shakes (but ones that I make as pre-made types cause me to throw up now).
I am already gaining weight, vice losing any more. I was down to around
140 lbs, which sits about 25 lbs below my average weight of 165 lbs.
I put on 4 lbs in the hospital and have put on another 4 lbs since getting home.
With my weight and strength trending positive, I start chemotherapy on Tuesday.
Now begins another health battle to make sure I withstand the treatment regime while also keeping a healthy weight.
I have to stay strong through Thanksgiving as that is when I will complete my last infusion.
Here’s to the battle that continues to rage! Here’s to joining the survivors!
So, I can’t seem to get enough of the hospital.
Yesterday, I had my bloodwork in preparation for chemo later in the week. I did not look my best…nor was I feeling my best.
After an impromptu office call with my oncologist, I was admitted into the hospital to come up with a better nutrition plan as I discussed in my last blob post.
I now have new PICC line placed in my right bicep…and in about an hour, I will start on TPN to provide me the calories and nutrients I will need to make it through chemo.
I’ll ramp up my TPN dosage over the next couple of days and then start chemo on Friday.
I feel renewed with this new nutrition strategy and know that I’ll endure my last sessions of chemo well…or at least as best as can be expected.
This Wednesday, October 9th, I start my second phase of chemotherapy.
Four grueling infusion sessions over eight weeks that will once again fill me with the FLOT chemotherapy regime as it is the currently designated most effective drug cocktail to deal with stomach cancer.
*** As mentioned before, a side benefit of this chemo is that other cancer cell types (esophageal, intestinal, colon, prostate, and testicular) will die, too.***
I am not looking forward to the chemo treatment…and not for the reasons you may think.
My first round of chemo went fairly “well”. I never threw up. I did lose my hair, but I only lost a few pounds, that I quickly gained back. And I only ended up in the hospital once for a brief 24-hour stay that may or may not have been chemo-related (the doc’s still don’t know what happened).
I am not looking forward to the treatment this time because my post gastrectomy healing has not been going as well as planned and hoped.
I have been home from the hospital for almost two weeks now. I am still in a bit of pain from the two stents placed to isolate the perforation between my esophagus and jejunum…the reason I ended up in the hospital for almost a month.
Though I have no leakage out of the perforation, the stents apply considerable pressure in my chest that makes eating and drinking difficult. Along with the fact that the two stents effectively render my esophagus to be no larger than 2-3 centimeters in diameter…which means my food has to be very finely chewed or blended to make its way into my small intestines. If the food is too big…I’ll just say that eating (or even drinking) becomes a very unpleasant experience.
Also, while the doctor’s told me I would have a reduced desire or sensation to want to eat, I never imagined that I would never feel hungry. Ever.
I mean I am never, ever, ever, never hungry.
I force anything I do eat or drink. And only done on a time table according to the last time I ingested something (about every 2-3 hours).
I, unfortunately, am not getting enough calories a day. With the aid of a nutritionist, I am trying to “cheat” my way to more calories through meal supplements – fortified milk (whole milk with added dry milk), heavy cream, mayo, ranch dressing, and / or specially formulated food enhancers to boost my raw calories and protein (like Benecalorie and Boost Very High Calorie supplements).
I fear it will not be enough to get me through chemo.
I reached out to the doctors to share my concerns and the fact that I continue to lose weight (I tip the scales at a burly 140 lbs – I went into surgery on August 26th at 175 lbs).
The current plan is to set me up with a home Total Parenteral Nutrition or TPN feeding regime. In short, it is an intravenous means to get me the nutrition I need to endure chemo.
Another option could be a feeding tube direct into my small intestines.
I had both means of nutrition while I was in the hospital. I had a PICC line placed for the TPN and a tube in my nose down to my intestines for the feeding tube.
I would need surgery to place a new feeding tube in my abdomen. Surgery and chemotherapy do not go well together, minimizing a feeding tube as an option. So the doctors will most likely place another PICC line or some other catheter in me and proceed with TPN for the duration of my chemo.
I’ll be able to run the TPN at night while sleeping at home. It should provide the daily nutrition I need to endure these last sessions of chemo.
This has been a long, hard road. It is not over yet, but the end is near.
Though I have endured much of my treatment and recovery alone, I still share a sense of community and support as never before in my life. We have gotten this far together, and will finish together – stronger and better for the effort!
I completed my sentence recovery in the hospital today!
Four weeks + one day total hospital time. Seven additional procedures completed beyond my primary surgery to have the cancer tumor – and the rest of my stomach – removed.
At home with my beautiful wife and wonderful kids, where the real healing and recovery will carry on.
I know I endured the month-long hospital stay because of the prayers, faith, fasting, love, support, and visits of so many family and friends.
I continue to build up my strength to tackle the last phase of my treatment (another 2-month round of chemo) in order to truly declare that I am cancer free!
I’ve got no strings to hold me back…
Another week in the hospital, but one that is getting me closer to getting home.
Last weekend, I learned the initial stent failed to halt leakage through my perforated esophagus-jejunum suture. This is the second failed attempt to control the perforation leakage – the first being the bear clips.
Therefore, after much discussion, the doctor’s determined the best way forward was to add a second stent in order to create a better seal to protect the perforation.
The doctor’s prepared for a third endoscopic procedure for Monday or Tuesday. However, upon review of their stent inventory, the Gastro-Intestinal surgical team discovered the last stent in the hospital already sat in my body.
After some end-of-fiscal year money shenanigans (don’t get me started on 4th quarter U.S. government spending), an overnight order was placed. Surgery was expected to occur the next afternoon…
But like many other oddities with my medical situation, “overnight” on Monday order really mean the part showed up late Wednesday afternoon.
So, on Thursday, a second stent was successfully placed in my esophagus and jejunum.
This past Friday became Judgement Day: is the perforation still leaking?
Needless to say, Thursday evening resulted in some restless sleep. Pain management remained difficult with this stent placement as was the case with the first one.
Friday morning, I was wheeled down to the Radiology Department and stepped in front of a fluoroscopy machine – essentially a real-time x-ray scan that plays like a movie rather than traditional static x-ray shots.
The sequence of events unfolded as such:
– I drank nasty stuff.
– The doctor’s sat around the monitors watching the liquid snake its way down my mouth and throat, through the stents and disappear into my small intestines.
– I would be told to drink more as the floroscope techs manipulated the machine this way and that at the doctor’s orders.
– Repeated this process for about 30 minutes.
In the end, it appears the second stent did the job…no more leakage out of the perforation! Third times the charm!
Upon return to my room, the doc’s immediately expanded my diet from the protein nose-fed goo I have been receiving for the past week, to a “clear, liquid diet” – which means I can nibble on ice, sip water, and drink juice and broth (not together, mind you…that would be disgusting).
I am tolerating the additional liquids to my diet so far, even though I am not that hungry or thirsty due to on-going IV hydration and nose-feeds.
While the diet is interesting, I am most grateful for the progress I am making towards getting home. My blood work continues to show I am doing great. I have passed all my physical therapy, occupational therapy, and respiratory therapy “go-home” goals.
My final hurdles to going home involve pain management (two stents in my chest don’t feel the best…I’ll most likely keep them for the next 6-8 weeks); expanding my diet to some solid foods (which starts on Monday); and finishing out an antibiotic regime.
I am so grateful for all the prayers and support that have helped me endure a month in the hospital. I know they will carry me to my home, and my wife and kids, very soon!
You, dear reader of this blog, may be asking, “What has Dave been up to for the past ten days that he hasn’t provided too many updates?”
Well, I may have been working on this secret project:
I wish I was working on a superhero robot that not only fights crime, but provides personalized, first-level medical care.
The reality is far more dire.
As I reported briefly in one of my last posts, I perforated the stitching that now connects my esophagus to my jejunum to create a small, stomach-like pouch. The “event” occurred at home shortly after I got discharged from my first week in the hospital.
Within hours of getting to the hospital and receiving the perforated diagnosis, I was taken to the Gastro Intestinal clinic and underwent an evasive endoscopy to place clips along the perforated area to seal the opening. The infection risks were too great for surgical intervention; an endoscopy emerged as the recommended treatment option.
At the same time, first of two drainage tubes was placed in the right side of my abdomen.
Initially, it appeared the clips sealed the hole in my new digestion tract.
Since arriving at the hospital, I get asked three things the most:
1) What is my full name?
2) What is my date of birth?
3) On a scale of one to ten, how would I rate my pain?
How would I rate the pain? Let’s just say I started in the emergency room at a 10.
My pain levels hovered between 9 and 10 as I endured another placement of a drainage port, this time on my left side of my abdomen. And then learned that the bear clips failed to completely close the perforated section of my esophagus. I still had drainage coming through the perforation into my abdomen.
To remedy the perforation, I had two options: 1) undergo risky surgery to have the perforation “re-sewn” but strong likelihood to spread the infection throughout my body; or 2) complete another endoscopy, but this time, instead of using clips, the docs would place a stent in my esophagus and jejunum, and then suture it in place.
At my doctor’s recommendation, I went with option 2 to have the stent placed. In short, the docs would place a 12-centimeter sleeve in my esophagus into the small intestines, essentially by passing the current perforated area to heal on its own.
Coming out the the stent placement procedure, my pain level immediately jumped and stayed a a 10. If felt as if someone starter a fire in the middle of my chest and continued to stoke the flames with a red-hot picker.
As I was taken up to my room for recovery, the pain continued to get worse and my breathing grew so short that the staff declared an emergency code and every available doctor and nurse swarmed into my room.
Now hooked up to an EKG and paddles at the ready, the doctors frantically sought to bring my breathing rate, heart rate, and blood pressure down from their critical levels.
Though it took some time, and lots of pain meds, my breathing, heart rate and blood pressure came under control.
For the past week that I have remained in the hospital, my primary goal is to keep the pain in check each day. I have had a number of other medical scares emerge: possible stent failure (x2), unexplainable rises and falls in my white blood cell count, and accumulation of water in my lungs and extremities (pro life tip: if you are given Lasix water medications, make sure you are near a bathroom for the duration of the med’s effectiveness – you will flow like Niagara Falls!).
As I have gotten my pain and other symptoms under control, I did receive some really good news on the biopsy from the cancer tumor and lymph nodes extracted during my 26 August 2019 surgery.
After reviewing the pathology report, I really feel like I’m on a positive path to recovery…finally. Here is a brief summary on the great news:
1) The first phase of chemo had a positive affected on the tumor by slowing its growth in some areas and halting growth in others.
2) My surgical oncologist removed 32 lymph nodes – zero cancer was found in any of them (I remember him saying he took only 12 nodes.
3) The cancer was further along than initially diagnosed… I was actually at Stage 3 cancer vice Stage 2. The tumor was on the verge of making its way completely through my stomach’s lining.
4) Because of point 3, my doctor’s made the right call during surgery to completely remove my stomach. Had they only performed a partial gastrectomy…I really don’t want to think about that. I know the doctor’s thoughts and actions were heavenly guided in the actions they ultimately completed.
During my stent placement, the doctor’s also placed a feeding tube. To ensure I was receiving some nutriments, I have been on an intravenous feeding regime for the last 5 days or so.
But now, with the stent in-place, the doctor’s started me on a digestion-based feeding yesterday. I will continue this feeding until Monday, when I get to re-introduce a clear, liquid diet (water, broth, juice), followed by a soft diet (mashed potatoes, scrambled eggs, protein smoothie).
Once I can eat, we will start planning for my to return home; which will put me at about a month in the hospital!
While the surgery and my recovery has been painful, slow going, and frustrating at times. This past month has also been inspiring, stimulating, uplifting, motivational, and soul stirring.
And with that, I am stratified with my care!
I continue to recover from the perforated esophagus and small intestine connection.
Yesterday, at the request of my lead surgeon, Interventional Radiology – the surgical specialty the uses x-rays, CT scans, and ultra sounds to complete procedures – place another drainage port in my abdomen to get a collection of suspicious gunk collecting between my surgical site and my liver.
After an hour-long, very painful procedure where I was only partially sedated, success!
Within a short time after the port was placed, I had expelled a couple cups drainage fluid.
I was so exhausted by this last procedure, last night I slept the most I have been able in the past 2 weeks.
I still needed to be awaken a number of times for testing my vitals and draw blood. My vitals came back great time and again, however, it was near impossible to draw anymore blood. My veins just collapsed pick after poke.
A touch count has me at a combined 18 IV and blood draws in the past week.
A young Medical Tech got out an Ultra Sound machine to assist in finding a vein to get blood for lab work. His two attempts with the machine where unsuccessful and I have two quarter-sized bruises as the result.
Fortunately, I had one good IV port that could be used for a blood draw.
But I don’t have to worry too much more and blood draws and IV placements as this morning I had a PICC Line – something very similar to my chemo port – placed in my upper left arm which allows the docs to feed me intravenously, while also administering IVs and blood draws.
Progress continues and I know each day makes me better…even if at time the pain seems unbearable. I am doing my best and know that others are doing their best to the point that I am receiving blessings and support beyond measure.
I’m back in the hospital.
Shortly after I got home, I came down with a coughing fit that burst some stitches from my esophagus attached to my small intestines. The result: leakage into my lower back
The non medical summary: I coughed too much and what little stuff I have ate and drank squirted out and started to to fill up my belly with a lot of angry “love”…meaning it hurt like no ones business.
The docs where able to clamp up the whole and confirm the leaking has ceased. They placed a drain bag to get rid of the sludgy mess in the small of my back.
A feeding tube has been placed, but the docs aren’t sure they’ll use it or not, yet.
And so the adventure continues…
Finally made it home to complete my gastrectomy recovery. I know being in my own bed, surrounded by my wife and kids, will speed up the healing process.
I go back to see the surgical team on September 10th to get the pathology reports of the tumor and lymph nodes…and hopefully to have the 25 staples running down my abdomen removed.
Until then, a whole lot of bed rest and getting used to my new diet.
Twentythree/5 