I Love To Go A Gardening
Growing Our Life in Northern Michigan
Hair-Raising
When EJ called the repair shop yesterday to make an appointment to get our car fixed, he was told that cars were repaired on a first-come, first served basis. He wanted to get our car in early, hoping that it would be fixed before he had to leave for work.
I set my cellphone alarm for 6 a.m., which is the time EJ wanted to get up. When the alarm went off, I struggled to the surface of sleep, woke EJ, and then submerged back into sleep.
EJ was home by about 10 a.m. with our car fixed. I braced myself to hear how much the repairs cost. I was relieved that it was only $500. I was expecting much, much worse.
I am doing little tasks and projects, but nothing too strenuous yet. Yesterday I was able to put only one coat of varnish on my bird houses. Today I was able to put the second coat on them, and then I was able to put two coats of varnish on the bottom of them. I think that they are looking nice, and I’m glad I put varnish on them instead of paint. Maybe in a day or two, EJ can get them installed on posts for me.
JJ’s hair is beginning to grow again. The very fine fuzz on his head isn’t very noticeable, but he now has eyebrows, a mustache, and hair on his chin. I told him that he now looks quite dashing. I take a picture of his face every few days so we can chart his hair growth. We are all trying to guess what his new hair will look like. We have been told that a person’s hair is often different after Chemo. It can be a completely different color or texture than it was before. We are trying to decide if his eyebrows and mustache are a darker color than before. (Click on a picture to scroll through larger pictures.)
Looking through my pictures to find before and after photos of JJ squeezed my heart. I thought of all the suffering he has endured between the first picture and the last one. He looked so young before he was diagnosed with cancer. Suffering has matured his face and given it character.
All About Today
After each major hurdle has been passed in JJ’s battle with cancer, I always think, “Ahhh! When this particular thing is over, we can REST!” But that is not really so. Or, at least, it hasn’t been so thus far. We still have busy days ahead.
I had trouble sleeping last night so I woke feeling exhausted. Wouldn’t you know that this would be the morning that the oncologist’s nurse called me back? Yesterday I was prepared for her call, but today I was groggy and I think I sounded sort of stupid. Oh, well. I asked my questions and either Friday or Monday JJ will have lab tests, Tuesday he gets his staples removed by our family doctor’s nurse, and Wednesday he has a follow-up appointment with the oncologist. At the appointment, I hope to learn when JJ’s port needs to be flushed and when we need to plan CT Scans.
I was going to call the surgeon’s office today to ask if JJ needed to have a follow-up appointment with him in Indianapolis–hopefully not because that’s a long trip!–but I decided that I would wait until tomorrow when I’ve had enough sleep (I hope) and can sound more intelligent.
EJ arranged to take the car into the repair shop tomorrow. He has to get up early in the morning, but he plans to sleep while waiting for the car to be worked on. Hopefully the repairs won’t be too expensive. I will stay home with JJ.
Our TV is indeed sick. Getting it fixed is farther down the list behind medical bills and car repairs. It’s kind of a bummer because we don’t need any more bills. Plus, we love watching movies…but at least we still have our computers.
The weather was very nice today so I ended up doing quite a bit of walking. I walked to the bank and post office with EJ this morning. After he left for work, I walked back to the post office to buy stamps so I could mail some bill payments today. Then I took Danny for his daily walk, which he loves. Later, I cajoled JJ to take his daily walk. He went a little further today than yesterday. Then when I got him settled back in the house, I walked to the little gas station store and bought milk.
I had intended to paint my bird houses with varnish this afternoon, but I was so tired that I decided to take a nap instead. I dozed for less than a half hour and then I woke. I really wanted to sleep longer but, oh, well, it is what it is. I decided to paint the bird houses after all. I am hoping to put another coat of varnish on them later today. Tomorrow I want to paint the bottoms. Maybe we can get them up soon. Already sparrows are building a nest in the bird house we put up last year.
The young woman who stayed at our house and cared for our pets while we were in Indianapolis wrote a daily journal for me. EJ, JJ, and I enjoyed it so much that I asked her if I could share it with you all. She said that I could. Here it is:
Tuesday’s Prognosis
The humans are all still alive and doing well. The canine lives a very sedative lifestyle, but is otherwise doing well. The felines are very emotionally needy, but are doing good 🙂 The cactuses are thriving, but two of the other plants have died.
Wednesday’s Prognosis
The human is trying 
The cats are obnoxious.
The dog needs a bath.
The plants are over watered 😦
Thursday’s Prognosis
The human has many chores left to do.
The indoor cats have a new hobby of puking in the back room where I walk.
The dog likes to go in and out many times but otherwise has angelic behavior.
The plants are all still alive except one that is dying.
Friday’s Prognosis
The human has done a great deal of laundry.
Timmy is much more trusting of me. Luke acts sad and like he doesn’t feel good. He was doing great the last couple of days.
Danny sleeps by the door only about 20 – 30% of the time. He loves to be outside in the yard.
The plants are all healthy but sunlight deprived.
~ ~ ~ ~ ~
This was our friend’s first time being on her own. She did a good job taking care of everything while we were gone. She said she had a lot of fun.
HiBEARnate
Last week in Indianapolis was extremely difficult. I can’t even describe what it was wait while JJ was in surgery, to stand by his bedside while he was in pain, and to get very little sleep. But we had the strength to get through it.
We had “Sisu,” a Finnish word that is not easily translated. Sisu means, more or less:
- endurance, resilience, tenacity, determination, perseverance
- an inner reserve of diligence, capacity, the ability to face head-on and always overcome
- craziness: the recklessness that inspires a person to take on something in the face of incredible odds
- bravery, empowerment, inner strength
- Gritting your teeth, continuing to fight against an overwhelming enemy, clearing a forest with your bare hands, continuing on to win a race even after falling.
- Sisu means that you finish what you start, you don’t quit in the middle of a job, and you don’t whine.
We had Sisu all last week and although the week was difficult, we had strength to get through it. But this week, now that we are safe at home, I feel as if my batteries have died and my system has crashed. I am exhausted and what energy I have quickly drains away. I feel easily frustrated and irritated, but I am horrified by that and try not to let it spill out. I think I am mostly successful (at least, EJ says I’m doing ok). I think I simply need to recharge.
I sort of want to hibernate like a bear. (Just so you know, bears get grumpy when they can’t hibernate.)
JJ is doing mostly good. Sometimes he doesn’t feel very well and he says it’s almost like he’s on Chemo. Other times he seems to do quite well. He can’t lift anything heavier than 10 pounds for about a month. The doctors said he probably won’t have much of an appetite for a while, and he should eat what he can and not worry about eating if he isn’t hungry. He has to move around a bit because lying around all day could lead to blood clots or pneumonia. I encourage him to go for a short walk with me every day. The doctors said to try to walk a little more each day than he did the other day. We set little goals: first to the stop sign, then to the telephone pole, and then down the street.
JJ will probably get the staples out on Tuesday. I learned today that we can walk into our family doctor’s office (without an appointment) and a nurse will pull them out. I called JJ’s oncologist’s office yesterday to ask if JJ has a follow-up appointment (if so, maybe he can pull the staples), when we are supposed to get JJ’s port flushed, and how we arrange for the CT Scans he’s supposed to have every other month. It always takes at least 24 hours for the oncologist’s office to call back. I didn’t hear from them today. I will have to call again if I don’t hear back tomorrow. I also have to call the surgeon’s office soon to see if we have to return to Indianapolis for a follow-up appointment. It’s possible we won’t have to return but can have a follow-up with a local doctor. I hope so. It’s a long trip to Indianapolis. There are still a lot of medical things to think about and schedule.
Spring is here, and the weather is warming a bit. I look out in the yard and see major things that need to be done–like a dead tree taken down, new fences to replace ones that got smashed by a tree over the winter, the garage needs to be painted. It’s frustrating because I don’t know when I will be able to get to these tasks. I was glad winter lasted a long time this year so I didn’t have to worry about working in the yard.
Our car is developing problems. It may need major repairs. Sigh.
Our TV didn’t act right tonight. The screen went blank, we heard audio, but then the TV turned itself off after a few seconds. It did this whenever we turned the TV on (audio only and then the TV turned off) so we unplugged it. I don’t know if the problem is the TV or the cable company. Right now I kind of don’t care. If something is wrong with the TV, repairs will have to wait for awhile.
We might need another supply of Sisu.
After EJ got home from work tonight, we went outside to look at Mars. The earth is between the sun and Mars, so Mars looks big and very red. It was very cool.
Home Again, Home Again, Jiggity Jog
We started off on our journey home from Indianapolis at about 10:30 a.m. yesterday. We expected a difficult journey home, especially since JJ didn’t feel particularly well earlier in the morning. However, the trip went well. We let him ride in the front seat so he could recline his chair a bit. I sat in the back seat and held his balloons down so EJ could see out the back window.
We arrived home about 3 p.m. We went to bed earlier and slept all night without doctors or nurses waking us. We took it easy today. I took a nap this afternoon. I suspect it will be a while before we will not feel so tired.
Discharge!
Afternoon
Perhaps because I got up at 4 a.m. this morning, this day has seemed very long. Not long in a bad way. It’s just that with everything that happened today, I kept thinking it was later than it was.
Earlier in the morning I had looked out the window to look at the clouds and I noticed a goose sitting in a courtyard below us. At various times through the morning I looked out at him. One time JJ joined me and another time EJ did. The goose remain there all morning. He (or she) threatened to attack anyone who walked by, and many people jumped over a low walk rather than get too close to the goose. It was pretty entertaining. I wondered if the goose had a nest nearby.
This morning…10? 11? We were told that JJ’s discharge was approved and he could get ready to leave at any time. From that moment, life got busy. I packed everything and EJ took a load down to the car while I helped JJ get dressed. Then EJ went to the hospital deli to buy us yummy sandwiches for lunch while I asked a nurse if she could tell us if JJ’s prescriptions had been called in to the hospital pharmacy yet (they hadn’t). EJ brought the sandwiches back and I packed them away. Then the prescriptions were ready and EJ went down to get pick up the prescriptions while I waited for the nurse. After a bit, she came and took the IV thingys out of JJ’s arm, went over the home care instructions with us, had JJ sign his discharge papers, and told us the guy with the wheelchair would be up in a few minutes to take JJ to the car.
I was hoping EJ would get back before the wheelchair came because we still had some a couple more bags to take home, including the computer case with EJ’s and JJ’s computers in it, which was very heavy. However, EJ was delayed at the pharmacy and the wheelchair arrived. JJ sat in the wheelchair, I gave him his balloons to carry, and I lugged the heavy bags while we journeyed through the hospital. JJ looked pretty funny because he could hardly be seen through the many balloons. People we passed were impressed with his bouquet of balloons. “Wow,” they exclaimed. “You must have a lot of friends.”
We passed the pharmacy on our way to the door, so we paused and waited for EJ to get the prescriptions. A little girl with her father saw JJ’s balloons and kept saying, “Daddy, I want a balloon. Can I have a balloon, Daddy?” So JJ took gave her one of his balloons. She was so happy.
After EJ got the prescriptions, we all continued on our way. When we reached the lobby, EJ hurried to get the car while JJ, the wheelchair guy, and I waited. Every time the front door opened–which was a lot–the wind blew the balloons into JJ’s face. it was pretty funny.
We finally got in the car and on our way to the hotel. It was quite an ordeal getting JJ and the luggage up to our hotel room while EJ parked the car. At last we got JJ in the room and settling on the couch.
Later, after he had rested, EJ and JJ went down to the little hotel store and got JJ themselves some ice cream. They returned to say that ambulance people were taking out a person from the room across the hall.
Evening
I have a friend that I haven’t seen since we played together as children. We reconnected on FB a few months ago. She realized that we were in her area–she lives in Indianapolis–so she stopped by to visit this evening. She brought us two pizzas from Whole Foods. They had interesting and yummy toppings. she also brought little desserts that were delicious. We all really enjoyed her visit.
And now our day is finished and we are headed to bed. We have a long drive ahead of us tomorrow. I told JJ that if he didn’t feel up to it yet, we could delay a day and head back on Sunday, but he said, “I just want to get home!”
I expect it will be a long tiring drive, but home is at the end of it.
Friday Morning in Indianapolis
Last night at about 7 p.m. EJ laid on the couch intending to sleep until 11 p.m., but he couldn’t get to sleep so I took over the couch at 10 p.m. I slept until about 4 a.m., only somewhat drowsily aware of nurses coming into the room during the night to check on JJ and take his “vitals.” At 4 a.m. I traded places with EJ and he slept on the couch while I sat in the chair. I walked down the hall several times to refill my coffee cup at the coffee machine in the “refreshment” room…or whatever it’s called. While my guys slept, I sipped coffee and browsed interesting posts and articles shared on Facebook.
At about 6:30 a.m. the doctor came in to check on JJ. He asked JJ the usual questions: How are you doing? How are you feeling? Any problems? and so on. He asked if the surgeon, Dr. Foster, had told us about the pathology report. I replied “Yes, he said that there was teratoma in the lymph node so it’s a good thing it was taken out.” The doctor nodded and said that the reason teratoma is so dangerous is because it doesn’t respond to Chemo. I think it’s interesting that doctors and nurses mention different facts so we learn different things from all of them.
The doctor said that Jared will be released from the hospital sometime this afternoon. He asked if we were headed right home, but seemed pleased that we were planning to spend the night at the hotel before leaving tomorrow. We can delay leaving until Sunday if JJ feels he needs more time before making the journey home, but I think he will be anxious to get home. I look forward to sleeping in the hotel tonight. It will be nice to not have nurses waking us in the night and to not have to take turns sleeping.
Before the doctor left, he asked us “Where are you from again?” We told him “Michigan” and he said he is also from Michigan, but farther north. His wife is from Michigan also (Ann Arbor) and he just got a job there and will be moving there. If I could remember this doctor’s name (I keep forgetting to ask), I would recommend him highly. He is very, very compassionate.
After the doctor left, JJ planned to go back to sleep so EJ decided to take me out on a breakfast date…to the hospital cafeteria. Before we left I told JJ that if he had any problems to push the button to summon a nurse. He hates to summon the nurses because when he was having Chemo, he saw people nagging the nurses by frequently pushing the call button. On our way to the cafeteria, I stopped at the nurses’ station to let them know we were leaving JJ for a few minutes so they would know he would be alone. Honestly, I feel like a new Mom leaving her baby with a babysitter.
On the elevator, I told EJ that it was amazing how quickly we adapt to “new normals.” When JJ was having Chemo, our world was the Cancer Center and we quickly became familiar with our surroundings and we established routines. Now our world is the sixth floor of the hospital, which is called “Krannert.” More specifically, our world is JJ’s room.
EJ and I selected breakfast from the cafeteria then went to a small table and ate together. We weren’t gone long.
Not long after we returned to the room, the night nurse arrived with her replacement. In this hospital, when shifts change, the departing nurse gives the arriving nurse the information about a patient–doctor’s orders, medications, last dosage, problems the patient is having–at the patient’s bedside so the patient (and his parents) can hear, verify, and question what was said. At the same time, she introduces her replacement and says goodbye to us. It’s kind of cool.
I liked last night’s nurse, whom we’ve had a couple times. She was funny. Last night we had the lights off in JJ’s room so he could sleep. We turned the lights on in the next room (the one-time board room) so his room wasn’t in total darkness because we didn’t want to trip or bump into anything. I asked the nurse if she needed more light so she could take JJ’s vitals, and she said “No. I am a Ninja, Zombie, Vampire and I can see fine in the dark.” LOL. As she left this morning, we told her that we appreciated her care of JJ and she said she enjoyed us. We were the easiest family ever to take care of. That’s good to hear.
My next post will be from our hotel room. 🙂
Thursday in Indianapolis – Part 2
After a rough start, JJ had a great day. I can’t believe how rapidly he is improving and strengthening. It’s amazing.
JJ is now unhook from everything: IV, catheter, oxygen, everything. He is now only connected to one thing: His computer.
After the doctor removed JJ’s dressing this morning, he said JJ could now eat solid foods. He said JJ’s appetite likely won’t fully return for another month or so, and JJ will probably eat a few bites of food and then not be hungry. He said this was normal and JJ should listen to his body and eat when he feels hungry and stop eating when he doesn’t.
At about 9:30 a.m., JJ went on his first walk. He wasn’t sure he could make it but the Patient Care Tech who helped him encouraged him to at least try to make it to the door and back. He made it to the door, passed an intersecting corridor, turned left at the next corridor, down a parallel hallway, a left turn and back to his room in the corner. It was an incredible first walk. I felt as proud of him as if he were a toddler taking his first steps ever. A few hours later, JJ took another longer walk. He seemed much more confident and stronger on the second walk.
The surgeon stopped by JJ’s room to tell us about the pathology report. He said that there had been teratoma cancer cells in the lymph node. They are dangerous so it’s a good thing he had the lymph node removed. They got it all and he sees JJ having a long life. Of course, doctors will keep an eye on JJ over the next few years to make sure he is ok, but the news was great.
In the early afternoon, JJ asked for his laptop. I cleared off his table so he could have the computer in front of him. He has been enjoying connecting to Internet friends. (I had been using JJ’s computer but now I am sharing EJ’s.)
About mid-afternoon EJ and I dashed back to the hotel to shower again. There is a shower in JJ’s hospital bathroom, but a problem was found in the hospital’s water so although they say it’s safe to wash our hands, we can’t drink, shower, wash our face, or brush our teeth with the hospital water until they are given the “all clear.” They don’t know when that will be so once a day we dash back to the hotel.
When we arrived back at the hospital today, we stopped at the cafeteria and bought supper. I chose the healthiest thing I could find. All these months of sitting in Chemo/hospital rooms, little exercise, and restaurant food has caused me to gain weight. Bleagh. One of my goals when we get home is to lose weight and get in shape. I don’t want to see more restaurant food for at least a year. Maybe two.
When we got back to JJ’s hospital room, he was GONE! It was kind of a surprise because I wasn’t expecting his bed to be empty. He was off on another walk with a Patient Care Tech. This walk, or so I hear, was even longer than the other two.
We had a lot of rain this morning and more is on the way. Back home, our area had some freezing rain. I’d rather have the rain.
Here are pictures from today:
Thursday Morning in Indianapolis
It seemed as if there were many interruptions in the night. I was sleeping on the couch nearby, but I was so tired that I am not sure that I was aware of everything the nurses were doing to JJ. Sometimes I woke briefly and then fell back to sleep. When the noises continued, I woke up completely…ish. I was going to surrender the couch to Eric, but he declined and went back to snoozing in his chair. He only traded places with me in the morning. He is so gallant.
What I am aware that happened in the middle of the night is that JJ had to have his blood drawn and the nurses had trouble finding a usable vein. They tried a few times. Failed attempts are painful and they felt so bad to be hurting JJ. When they still couldn’t find a vein, they gave up and said they’d have a nurse with a portable ultrasound machine come and locate a usable vein and draw his blood. She arrived about 6:30 a.m. Before she could use the ultrasound, the three doctors arrived. I think two of them might be residents or students or something. This is a teaching hospital associated with Indiana University. The primary doctor of the three (I can’t remember his name) has been the one that has visited JJ each day throughout his ordeal. He removed the dressing on JJ’s wound this morning. It caused JJ a lot of pain.
After they left, JJ asked me to ask the nurse when he could have his next dose of strong pain med. So I went out into the hallway and found the nurse and asked her. Unfortunately, JJ had just had the med an hour before so he couldn’t have any more for a few hours. The nurse said she was told she could remove his catheter at any time, but she could tell from the doctor’s face when he left JJ’s room that the removal of the dressing had been very painful so she decided to wait a little while. She said that when the doctor had come out of the room he had winced, “Wow! That was intense!” When I murmured a sympathetic “oh” she said that the doctors are used to this, but it still bothers them to cause their patients pain. I said it was really nice to have such compassionate doctors. The nurse said that she loves working with this particular doctor especially because he is so VERY compassionate. I remember that the first few doctors JJ had after being diagnosed with cancer were not all that compassionate and some acted as if my questions were rather stupid. The first doctor I liked at all was JJ’s oncologist. He was compassionate. However, the doctors at this Indianapolis hospital oooze kindness and compassion.
I told JJ about my conversation with the nurse and the doctor’s reaction to taking off the dressing, and JJ said, “Oh! Now I feel like giving the doctor a hug!” JJ is very kind and polite to all the medical staff. Even after they have done something painful to him, he thanks them for their care of him.
After the doctors left, the nurse with the ultrasound finished her task. Then a few nurses came in and told JJ he could order solid food from a menu they gave him. He actually orders the food from the hospital cafeteria as if he is ordering room service from a hotel. They said to keep in mind that it takes about an hour for the food to be delivered. I asked JJ if he wanted me to order him something, but he didn’t sleep well last night and he isn’t interested in food yet.
Indianapolis is experiencing some severe thunderstorms today. At JJ’s request, I opened the blinds so he could see the storm. We all love watching storms.
About an hour after the doctor removed the dressing from JJ’s incision, a nurse came in and removed the catheter. There was some discomfort, but it wasn’t as bad as the removal of the dressing.
A short time after that, a Patient Care Tech just came in and reminded JJ that he is supposed to walk several times today. He asked if he could do it a little later because he hadn’t slept well last night (ya think??) and he’s really tired. He’s also afraid he will faint if he tries to get up because yesterday each time he sat up in the chair, his blood pressure dropped and he almost fainted. The Patient Care Tech said she’d let him sleep a bit and return around 9:30 a.m.
JJ was dropping off to sleep when another nurse peeked in and asked him if he had eaten anything yet. They want to start giving him pain meds in tablet form rather than in the IV now, but they can’t give him the meds until he has something on his stomach. JJ still isn’t hungry–he is more interested in sleep–but he chose a blueberry muffin and I called the cafe and ordered him two, one to eat as soon as it arrives and another to eat later.
I’m very hungry, but I have to wait for EJ to wake and go get us food. He showed me where the cafeteria was yesterday before our dash to the hotel but my Superweakness of Lostness has made the corridors into a confusing maze and I fear I’d never make it back to the hotel room. Fortunately my friend had the gift shop send us snack foods right after JJ’s surgery Tuesday, so I can nibble on them to prevent starvation. When this experience is over, I think I will not want to see another restaurant or snack food for at least a year. At least I can find my way to the coffee machine down the hall.
This has been an eventful day, and it’s only 9 a.m.
Oh, here is a humorous thing: Usually in-room bathrooms are reserved for patient use only but the nurse said that since we are in a private room we could use the bathroom. I am thankful for this since the regular bathrooms are located quite a distance away. The funny thing is that whenever the toilet in his room is flushed, it is so VERY, VERY LOUD that everyone in the whole hospital can hear it. What is worse is that the flushing lasts forEVER–like a minute or two. We cringe every time we have to flush it. The nurse last night said that a while back some workmen were working on some plumbing somewhere in the hospital and it made the toilet quiet. All the nurses cheered “YES!” and “YAY!” However, as soon as the workmen finished, the toilet went back to being noisy again. I am tempted to take a video of this loud and long toilet because it is unbelievable.
Wednesday in Indianapolis
I usually try to write no more than once each day, but I have nonFacebook friends who are reading this blog to get updates on JJ so I hope you all can be patient with more frequent posts this week.
JJ’s breathing got better over the day so he was able to get the stronger medication for his spasms. JJ was also able to get rid of the oxygen tube in his nose and he was able to drink clear liquids, including juices, broth, and jello.
JJ has sat in a chair twice today and is supposed to also sit for a third time. The first time was particularly hard for him–hard to get into a sitting position and lie back down again because his abdomen is so painful. Two patient care techs and a nurse helped him move from bed to chair and back again later. They let him move as slowly as he wanted. He was light-headed, faint, and nauseous. The second time didn’t seem quite as bad (although I’m not sure JJ would agree). He didn’t get “faint-ish” or nauseous until the end. I’m sure the third time will be better still. He has to sit up for at least a half hour each time to prevent blot clots, pneumonia, and also to work his abdominal muscles.
After JJ had successfully sat up the first time and was back in bed again, EJ and I dashed back to the hotel room to shower and change clothes. It made me feel human again. We packed a change of clothing for ourselves for tomorrow and I also packed soft, loose clothing for JJ to wear when he is discharged on Friday. We also stopped at one of the hospital gift shops and bought JJ a hoodie as a gift. I wanted a shirt that said “Cancer Survivor ” on it, but they didn’t have any of them in the gift shop so we got him the hoodie. We are considering also getting him a hat that says “Cancer Sucks.” It describes cancer quite accurately. (A couple of friends have asked for info so they can by JJ a gift from the gift shop. If any friend would like to buy him a gift, email me and I will get you the phone number.)
It is my belief that everyone has an interesting story. Because of this, we enjoy chatting with the medical staff. One of the Patient Care Techs today asked where we were from. When we told her “Michigan,” she said that she grew up in Indianapolis but has relatives in Michigan. So we talked about where her relatives lived and the beauty of Michigan, and all that. Then she told us that she always likes to ask people where they are from because she has cared for people from all over the world, including Australia and Iceland. She said that she has even cared for a prince from India! That is very interesting. The nurse yesterday said she had cared for someone from Israel and also Pakistan.
JJ’s room is part of a suite. As a person enters from the hall, they enter what looks like it was a sitting room. It is mostly bare now with just a few pieces of furniture in it. EJ and I ate our lunch at the small table today while JJ slept. JJ’s room is off this larger room. EJ asked a nurse what the purpose of this other room was, and she told us that it used to be a board room with a large table in it. When rich businessmen were ill, their bed would be in the room that JJ is in and they’d have business meetings in board room. We thought that was interesting.
Three doctors visited JJ this afternoon to check his incision, etc. They said that tomorrow will be a big day for him: He will get to eat solid foods, he will get rid of the catheter, and he will get to walk. I don’t think he’s too thrilled about having to walk, but that is also an important step in his recovery. I think the doctors might remove the staples in his abdomen too. I can’t remember. It’s a big day, but will also probably be a rather difficult day because his abdomen is so painful.
About 6 p.m. I layed down on the couch and took a nap. EJ and I plan to take turns sleeping on the couch. The one not sleeping on the couch attends to JJ or dozes in a chair. We aren’t getting lots of sleep, but we are getting adequate sleep.
Tomorrow there are supposed to be severe storms in this area. That should be interesting.
Post Surgery
As time passes, we learn more about what is happening medically. The medical staff have explained that in order to take out the lymph node in JJ’s back, they have had to cut through a muscle. They also had to take out his intestines and then put them back in his body. When an intestine is touched, it automatically “goes to sleep” and it takes a day or so for it to “wake up” which is why JJ could only suck on ice chips yesterday. Besides incision pain, JJ experiences painful spasms because of the cut muscle. We can tell when he is experiencing a spasm because his whole body tenses up in pain and he clenches his fists. When we see him suffering a spasm, we hold on to his hands and let him grip our hands.
JJ has had a lot of painful spasms through the night and into today. When the pain gets too bad, the nurses talk to the “pain doctors” who manage JJ’s pain. The pain and, I think, some of the meds, is causing JJ to not exhale enough CO2 (which triggers alarms) so until his breathing is constantly in the “acceptable” range, the doctors have to be careful about giving him pain meds that would address the spasms because they can affect his ability to breath.
This morning three doctors came to see JJ. I think they were from his Urology Team. They checked his dressing, discussed his breathing, told us that JJ can begin drinking liquids, and said that the goal today is to get JJ sitting in a chair three times. Getting him upright will prevent blood clots and pneumonia. They said that from their stand point, JJ is doing excellently.
The medical staff–both the nurses and the doctors–are awesome. They exude compassion. Last night the nurse told us that JJ’s surgeon is the very best in the world for this type of condition and that people from all over the world come to learn from him or be treated by him.
Semi-private rooms just have chairs and families cannot sleep overnight. Families can stay overnight with patients who are in private rooms. The palatial private room JJ was moved into last night has a couch. However, it is only ONE couch. EJ and I have been taking turns sleeping. Since I had had the least sleep (a night of little sleep and another of absolutely no sleep), I slept on the couch during the night. The sleep is interrupted by medical staff and machine alarms. The nonsleeping person is busy attending to JJ. We are able to participate in his care somewhat. We find the nurse when there is a need, we turn off the CO2 alarm (which goes off often), we give JJ hot or cold packs for his abdomen and we hold his hands.
EJ and I are seriously sleep deprived.
We talked about making a brief run to our hotel suite for a shower and change of clothing sometime today. We slept all night in yesterday’s clothes because we weren’t prepared to stay overnight.
Surgery
JJ was able to get a couple hours of sleep during the night. I woke him a little after 4 a.m. so he would have time to take a shower before we left for the hospital. We arrived at the hospital by 5:30 a.m. as instructed and were told where to go to sign in for his surgery. A few minutes later a nurse took him back to get him in the hospital gown and all. We were told that we could join him when he was all ready.
We were able to sit with JJ in pre-op for quite a while. While we were there, everyone who was on the surgical team stopped in and introduced themselves. We were surprised that there would be five doctors working on him: the surgeon and his resident doctor, the anestheologist and his resident anestheseologist, and another doctor. I can’t remember what the last doctor did. They were all very friendly and compassionate and told us that they would take good care of JJ.
As soon as JJ was ready for surgery, we were directed to sign in with the lady at the desk in the surgical waiting area. She told us that the waiting area is divided up into sections. We were to choose a section and then tell her where we were so we could be easily found. Each section had a TV. There was free water and coffee available, vending machines, and computers for our use. We had brought our laptops with us so we didn’t need to use the hospital computers.
The waiting area had a Family Support person who would check on the status of the patients and then come and tell the families how their loved ones is doing. The first time we saw her was at around 8:30 a.m., she said that JJ had gone to surgery at 7:48 and that he was currently in surgery and doing well. The second time we saw her she said that he was in recovery and sleeping without a care in the world. She said that a nurse would not leave his side while he was in recovery.
JJ was out of surgery at about 9 a.m.. The surgery wasn’t as long as expected. EJ and I were led to a nearby consultation room where the surgeon met us to tell us how the surgery went. He said that the surgery went very well, it was very routine, and there were no surprises. I asked if this surgery would take care of all the cancer. He said that he’d have to wait for the pathology report to see, but it was likely that it would.
JJ had to have a pain med injected into his spine. That took 45 minutes because he had to be repositioned. Then he was in recovery for two hours. After he had stabilized, he was taken to his room and we met him there. We went to his room a little after 11 a.m.
When we arrived in his room, Jared looked very pale, weak, and drowsy. He indicated to me that he was in a lot of pain. I felt like crying. Then I started getting hot and clammy. I leaned over and said, “I’m getting faint.” EJ and a nurse helped me out of the room. Out in the hall, I leaned against the wall and slid down toward the floor–on purpose so I wouldn’t fall if I fainted. After awhile, I felt better and I was able to go back into the room. I was afraid I’d faint again when a nurse said that the reason JJ has stomach spasms is because his intestines were removed from his body to reach the lymph node and then put back in. Shudder. But I didn’t faint.
JJ is receiving oxygen through a tube in his nose. There is a sensor in front of his mouth that measures the amount of CO2 that he is exhaling. His body doesn’t want to breath or exhale deeply because he is in so much pain. If he doesn’t exhale enough CO2, the numbers on the machine go up past 60 and an alarm goes off. If the numbers stay high and the alarm keeps sounding for a certain amount of time, the machine won’t give him pain meds, which he really needs right now. Right now the alarm goes off every few seconds.
The nurse said that from their standpoint, JJ looks really good and is doing great. From our standpoint, this is the hardest day ever.
We weren’t in JJ’s room long when a young woman arrived with a bunch of balloons attached to a stuffed kitty for JJ. There was also a bag of snack food for us. They were all from my friend in Texas. I was so touched that I cried.
Visiting hours are from 5 a.m. to 11 p.m. We will be here as early and as late as we can.
Sleepless in Indianapolis
Usually I try to only write one post a day, but this night before JJ’s surgery is an exception. This night I am Sleepless in Indianapolis.
Sunday night I would have slept wonderfully except EJ wasn’t feeling well and he was restless. His restlessness kept waking me and JJ up. When we got back from the consultation with the surgeon today (I mean, Monday), everyone took naps. Since EJ was still sick, I let him nap in the bed, JJ slept on the couch, and I tried to nap in the recliner, which is slippery and doesn’t recline far enough back for a restful sleep. After a short doze, I got up.
Tonight, I mean, Monday night, EJ went to bed at around 8 p.m. He immediately fell asleep and has been sleeping ever since. That is GOOD, since he didn’t sleep the night before. He really needs sleep so he can feel better.
I was very tired, but I didn’t want JJ to be alone all evening, so I stayed up with him a bit. I finally went to bed because I know we have long hours and days at the hospital ahead of us and we need to have energy to be there for JJ. I went to bed but tossed and turned and tossed and turned. I kept thinking that I MUST get to sleep because we have to get up at 3 a.m. to get ready to be at the hospital at 5:30 a.m. Of course, the more time passed and the later it got, the less I was able to sleep. I felt a frantic “Tick Tock” in my head. “Tick Tock, Every minute you are not asleep is one less minute of sleep. Tick Tock.”
Although I am VERY, VERY GLAD EJ is sleeping, I found a tiny, tiny part of myself thinking, as EJ slept soundly beside me, that it is totally unfair that he is sleeping while I can’t because HE can sleep ANYWHERE, including in hospital chairs, and I find it IMPOSSIBLE to sleep in chairs. I will not get a smidgen a sleep until bedtime tomorrow night. I think I will look like a bloodshot hag tomorrow and scare small children.
I also keep thinking that the nurse at the surgeon’s office had suggested yesterday that we call our insurance company to see if they would pay for a private room because private rooms have sleeper couches for patient’s families. So EJ called the insurance company when we got back to our hotel room and the insurance company DENIED our request. I am thinking slightly bad thoughts about insurance companies denying JJ a private room with a couch where I might have been able to sleep.
About 1 a.m. I finally gave up on the possibility of sleep, and I went out into the living room where JJ was still awake. Once I gave up the idea of sleeping, I felt ok with it. I made myself some coffee, thinking JJ and I could have some sleepless Mom/Son time. We spent a couple of minutes looking out the window at the lights of the very large city. Most of the buildings we can see from our windows are hospitals. There are blocks and blocks of hospitals. We can see the name of one of the hospitals from our hotel window: Sidney and Lois Askenazi Hospital. With such a name, I figured it had to have a story behind it, so I looked up the hospital on the Internet Monday afternoon. I learned that in June 2011 Sidney and Lois Askenazi donated $40 million to build the hospital. It was one of the largest donations ever made to a public hospital in the USA. Their story is very interesting. You can read it HERE.
Next door to us is a hotel that is identical to ours. It’s amazing how many people are awake in the wee hours of the morning. We saw cars traveling on the streets and we speculated where they were going so late (or early).
After a few minutes, JJ put aside his computer and said that he thought he’d try to get to sleep. He laid on the couch, which is where he sleeps. He asked, “Do you think it’s ok to panic about my surgery now?” I said, “Absolutely. Go ahead, panic for a bit! I mean, if not now, when?” We chatted and laughed for a few minutes. JJ told me that he had actually tried to stay awake so he’d sleep during his surgery. “You silly boy,” I said, “Go to SLEEP. You don’t have to try to stay awake so you will sleep later. You will have drugs to make you sleep and you won’t be able to keep awake. SLEEP.”
Now I am alone in the dark sipping coffee and writing. At first I thought, “Ugh, this is like Hell Week!” But it’s not so bad. I sort of like night-time. Night feels like being in a secret hiding place where I can observe but not be seen. I feel invisible at night, but a nice kind of invisible. Night is for keeping vigil and sharing secrets. It’s the day–an exhausting day–that will be difficult.
A friend just share this quote by Julie Wright on her FB page. I loved it and felt it was appropriate on this long night, a night in which I am sleepless in Indianapolis. Since I can’t sleep, I will write about it. Difficult times make good stories, I think, even if they are about nothing more than sleeplessness.
In 30 minutes–at 3 a.m.– the alarm will go off and we will begin the day.
Monday in Indy
Last night a friend texted me that she had seriously planned to drive to Indianapolis to be with us while JJ has his surgery. It would have been a 6-7 hour trip for her. She decided not to come only because she is sick. People are being very considerate about not coming around JJ if they are sick. I was utterly amazed that she would be willing to drive all that way. She said, “You are worth it.” Another friend told me today that she and her husband had discussed coming to be with us–a trip of 1100 miles–but they couldn’t figure out how to do it. EJ said one of his sisters also considered coming to be with us. I am constantly astounded by the love of our friends. We have the most awesomely caring friends EVER.
We were tired yesterday after our long drive, so last night we ordered pizza to be delivered to our hotel room. That was fun, and the pizza was tasty. I looked out our window and saw the delivery guy drive up to the hotel. I also noticed that we weren’t the only guests ordering pizza. Here are some pictures from last night. Click on them to make them larger.
EJ was restless and up and down and up and down all night, first sleeping in the bed and then in the recliner and then back in the bed. I thought that his back was hurting him and he couldn’t get comfortable, but learned this morning that he hadn’t been feeling well. He said he felt swimmy-headed, feverish, and nauseous all night…and all day today.
When I heard how sick EJ was feeling, I felt a sense of panic. JJ MUST stay healthy for his surgery, and EJ MUST stay healthy because he is the only one who can get us to our destinations. I can get lost in a parking lot and lost in a gas station (and a theater, and a hospital, and….) so he CANNOT get sick. EJ stopped and bought some pepto-bismol tablets in the hotel gift shop as we left for the consultation with the surgeon this morning.
I had everything planned and packed for our trip to Indianapolis. I had figured that we’d mostly just be eating breakfast in our hotel suite so I packed several boxes of cereal. However, the trunk of the rental car wasn’t all that big so EJ left the picnic basket at home, and also a bag with some of the cereal. I thought we still had cereal in another bag so I was planning on us having cereal for breakfast this morning. Then I discovered that the bag that was brought with us only had snack crackers and a box of cereal that only EJ likes (and which he was too sick to eat this morning). So JJ and I had raisin toast and cold pizza for breakfast. Bleagh. At least I had coffee.
We arrived early at the Cancer Center. It was really quite beautiful. There were large bamboo trees along some of the hallways so that it looked as if the walls were living. One wall of bamboo divided a cafeteria area from the rest of the hall. The doctor’s offices on each floor overlooked an interior balcony so we could look over the half wall and see all the other floors all the way up and all the way down. I snuck one picture of JJ with the balcony behind him (which didn’t turn out all that well) but I felt kind of weird taking photos at a hospital as if I was a tourist. I found a couple of pictures of the hospital lobby on the Internet.
We had quite a long wait at the surgeon’s office. I felt very sorry for EJ because he was feeling so poorly. JJ and I kept each other entertained by cracking jokes that made us laugh.
Once we got back into the exam room, we found the staff to be delightful. JJ told the nurse about his pathetic breakfast, and she said, “That’s terrible! Would you like to come home with me? You could play X-box with my son and have GOOD food to eat. Or tell me where you are staying and I will bring GOOD food to your hotel room.” We laughed. JJ also her that he tends to be a “storm magnet” that attracts severe weather and tornadoes. She moaned, “Oh, great! There is supposed to be severe weather for the remainder this week.” “Yup,” we said, “It’s probably JJ’s fault.”
The doctor also was good–very warm and compassionate. He explained why he felt this surgery was necessary for JJ. He said that when testicular cancer patients have chemo–the very treatment JJ had–there are two results. One is that the cancer is completely gone so surgery is not needed. The other result is that there is an indication that there is still “something” in his body. In 20% of patients, the “something” is merely dead cancer cells. In 80% of the patients, the “something” is dangerous cancer cells. There is no way of telling which it is, so they prefer to remove the lymph node. He said that in some patients, a kidney (and/or other stuff) have to be removed. JJ doesn’t need that. There is a slight risk that the surgery could affect a certain nerve and cause a problem, but the risk is very slight. The surgeon expects JJ to be in surgery for only two hours and that the procedure will have no complications. Because of the way the surgeon explained everything, I didn’t have any problem with feeling faint.
JJ will be the surgeon’s first patient tomorrow. We have to be at the hospital at 5:30 a.m. so we will wake up at about 3 a.m. The surgeon said that JJ will probably head into surgery at around 7:30 a.m. He will be on a liquid diet for a day and then will be able to eat solid food. The surgeon said that because JJ is young and strong, he will recover quickly. He will probably be discharged from the hospital on Friday morning. Depending on our well JJ is feeling, we will probably leave for home on Saturday or Sunday.
After we left the Cancer Center, EJ drove us to a nearby grocery store. I bought saltines, ginger ale, and pepto bismol for EJ and milk and cereal for us, and a couple other things. Then we headed back to the hotel and EJ went to bed. He hopes that if he sleeps today he will start feeling better. (He doesn’t think it’s caused by stress.) I called my friend and then JJ fell asleep on the couch and I took a small nap in the recliner. We were all tired from our disturbed night.
I saw in the info book the hotel provided that there is a Kosher Deli nearby. I really wanted to order EJ chicken soup for supper, but I saw that they require a $100 minimum order for deliveries so THAT won’t happen. I would go to the deli to pick up the food except I would get lost forever. EJ doesn’t feel well enough to go himself. The other restaurants in the area that will delivery will deliver provide mostly pizza and subs. Or since we had pizza for breakfast, we could just have cereal for supper.
Indianapolis
We left home at 10 a.m. this morning for our trip to Indianapolis. The weather was perfect–blue skies and warm-ish temperatures. We were all in good spirits and the trip was fun. Too bad JJ has to have surgery. I told JJ that next time he does NOT get to choose our vacation destination.
I texted my friend as we drove along. I told her the cities we were passing through and she followed our journey using Google Maps. She let us know how many miles we had left to travel, the location of restaurants, and other interesting information. It was fun.
After we had driven for an hour or two, we stopped at a gas station so we could use the restroom. When I got out of the restroom, I went through the door leading outside and stopped in confusion because I didn’t see gas pumps or our car. Oops. I had gone through the wrong door and was on the wrong side of the building. Yup, I can get lost even in a gas station! I went back inside the station and found the correct door. Whew!
About 1 p.m. we decided that we were all STARVING so we began to look for a city where we could stop to eat. We stopped at Andersen. We stopped at two restaurants and they were totally packed with long lines of people eat out after church. We noticed then that all the parking lots of every restaurant we passed were filled with cars. We decided that we would keep driving. We figured that by the time we reached the next city, the after church crowd would have finished eating.
We found a restaurant called “Five Guys, Burgers, and Fries. in a city called Fisher. I had never heard of it before, but both EJ and JJ had heard of it. They said that it was said to have the best burgers in the USA. We discovered that the restaurant had no frills and they do not advertize their business at all, except for a sign on the highway. When we walked in, it was (apparently) obvious that we had never been there before, so the cashier, whose name was Zach, explained their menu and procedure. He was great. The food was good too.
EJ almost never gets lost. Ever. He can find his way ANYWHERE. That is very comforting for a person like me who has a super-weakness of Lostness. However, Ej has gotten lost TWICE before while driving through Indianapolis. TWICE. So I envisioned wandering helplessly through the city. However, with me reading off the directions from a brochure, he easily drove us to the hospital where JJ will have his surgery. It is like a university, with many, many various hospitals grouped together. It is HUGE. We located the cancer center where JJ will have his consultation with the surgeon tomorrow, and the main hospital where he will have his surgery. Then we drove to our hotel.
The hotel is only a few minutes away from the hospital. We arrived a little early and the room wasn’t yet ready for us, so we walked to a playground behind the hotel just to stretch our legs. Then we went for a drive. We passed the stadium where many people were arriving for a big basketball game between UCONN and MSU (Go MSU). Hopefully they won’t riot after the game like in some places. We also passed the speedway where the Indy 500 is held.
Our hotel room was ready when we got back. This is a hotel specifically designed for long-term residents. I’ve never stayed in such a place before–I mean one for long-term residents. The suite is pretty nice. The hotel gave us a list of restaurants that will deliver meals to our room. We are thinking about ordering out…maybe pizza? Tomorrow after JJ’s appointment, we hope to shop for a few groceries. We are too tired to go anywhere tonight. We won’t need many groceries because we will stay with JJ in the hospital most of the day and probably eat at the hospital most of the time.
Now that we are here, we feel tired from all the travel so we are relaxing. While I write this post, EJ is watching the game that is happening just across the river.
Pre-Indianapolis Blessings
We are almost ready for our trip to Indianapolis, except for last-minute packing and tasks. Today is Shabbat so we had a relaxing day. We usually spend Shabbat studying, talking, and relaxing, and we did that today.
EJ works with a man who is the husband of the woman who works at our bank. Jeff is EJ’s boss’s boss. They are both very sweet, kind people. They planned to stop by today to visit before we left for Indianapolis to encourage us. Paula ended up not accompanying her husband because she has a cough. Everyone has very careful not to come around JJ if they aren’t feeling well. We really, really enjoyed Jeff’s visit. It was the highlight of our day (and quite possibly our week). He told us that EJ is an incredible man and he feels honored to know him. I know that EJ is wonderful. I am glad that others can see it and that EJ could hear it.
Before he left, Jeff said that he and his wife wanted to give us a gift. He handed us an envelope with a sacrificial amount of cash in it. We have another friend who sent us money for a tank of gas. I feel so humbled by all the lovingly supportive people who God has brought into our lives during this time. I have no words to express my thankfulness.
After Jeff left, we all went for a drive in the rental car, just for fun. We first went to the post office because I had something that I need to mail TODAY. The post office was closed, of course, but I dropped the envelope in the mailbox outside the post office.
Next we drove to McDonald’s because JJ wanted to say “hi” to his co-workers before his surgery. The assistant store manager sat at a table with him and they chatted for a bit, as JJ updated him on what’s happening in his life. JJ said that he thinks that they’d accept him back immediately once he can work again. This doesn’t surprise me because JJ was an awesome employee. He was so hardworking and quick that his co-workers nicknamed him “the Grillinator” and JJ became “Employee of the Month” after working there only three months. One time JJ worked so quickly that the manager didn’t even realize until his shift was over that one of his co-workers had failed to show up.
The visits with Jeff and with the assistant manager were spirit-lifters for JJ–and for EJ and me.
We leave for Indianapolis tomorrow morning. I’m sure JJ won’t be feeling very well after the surgery, but we plan to enjoy the drive to Indianapolis and the time we have before the surgery. JJ’s has to be at the hospital at 5:30 a.m. (EST) on Tuesday. I will keep everyone updated about how he is doing as much as possible.
