Traveling with Friends

I think the steroids they give me in the first IV on treatment days make the following day much more tolerable than it probably should be. I say that because by mid-morning last Thursday (the first day of round two) all the leg pains I had experienced the previous three days were gone. I slept very well Thursday night in a hotel a stone’s throw from the oncology center. We were able have breakfast at the hotel among the European tourists enjoying a Santa Monica holiday. We nodded and smiled at the families speaking German or French as we headed to the most remote table we could find. We walked over to the treatment Friday morning. The rest of the treatment went uneventfully. Back at home Saturday morning I woke up feeling uncharacteristically energized. I did some laundry and caught up on a few light chores, feeling as if there were nothing wrong with me at all. Ah, drugs!

By Saturday evening my energy level descended and by Sunday morning I felt cruddy again. That feeling lasted two and a half days. Same flu-like symptoms as before, same fatigue, a headache (new for me) but without the novelty or angst I felt the first time I went through the side effects of chemo. By midweek I was back online doing some work and feeling more useful and human. It’s been ridiculously hot this week, as it has in many places around the country. Thank God for air conditioning.

My FMLA leave (Family Medical Leave Act – https://www.dol.gov/general/topic/benefits-leave/fmla) was finally approved this week, which allows me to take intermittent time off for treatments, doctor visits, tests and days that I’m feeling ill. This is a real help because it protects my job and my medical insurance during the coming months. While this is unpaid leave, I can also apply for California state disability insurance (https://www.edd.ca.gov/Disability/Disability_Insurance.htm) to help with those unpaid days. If you ever need to take FMLA leave, be careful to work with your HR department to fill out the forms carefully. My claim was denied at first because I left something blank that seemed logical to leave blank, but no. All is well now, thanks to HR and to some great and helpful friends that had to navigate this maze themselves recently.

I chatted online with another friend from work this week. You see, I have this feeling that despite everything that’s going on I wish I could physically be at my office at work. I feel like an important part of my life is missing. My friend said that he and his wife have had those feelings before after being away from work for awhile. It’s good to know I’m not the only one who feels like that. I’ll get back to work as soon as it’s safe to do so.

Thanks to everyone who has sent me their prayers, best wishes, help and kindness. It’s always a joy to hear from you.

Just a quick update – Thank you all for your cards, visits, prayers and assistance. These posts are for you.

For the past few nights my sleep was messed up due to a side effect of the last round of therapy – joint pain in both upper legs and hips. The doctor theorizes that the bone marrow stimulant drug may be causing the bones and joints to ache from so much activity. Another possible culprit is the broad-spectrum antibiotic which has an acknowledged side effect of tendinitis or muscle pain. At night I couldn’t lie in any position more than a few minutes before the aching began on whatever joints or muscles were bearing any weight load. After three nights with little sleep, the Benadryl I.V. they gave me at the start of treatment this morning really knocked me out. I’m happy Roslyn was there to make sure things went well, especially while I was passed out.

Today was the first day of my second round of treatment. I got the same infusions that I got during the first round. I had a different and less severe allergic reaction to the immunotherapy portion of today’s treatment. I got red, itchy rashes on the front of both thighs, each as big as the palm of my hand. This delayed treatment an hour or so as we waited for the rash to subside. Otherwise, the first day was uneventful. I hope tomorrow goes well, too.

The infusion room has other patients coming and going throughout the day. Unlike mine, most infusions take just a few hours or less. So many people are coming here, fighting diseases in this place. It seems depressing at first, but when you look closer, you see people that are taking up their personal fights for freedom and survival. You also see loved ones accompanying the patients, expressing their love through service and patience. Feelings of love and support permeate the room.

The next few days will probably be rough as the fresh drugs do their work on the cancer cells. I’ll be back to drinking lots of water and probably having those flu-like symptoms again. But as my dear daughter reminded me today – I’m almost 1/3 done with these infusions. I cannot wait for the freedom that being done will bring.

Just a quick update. It’s been a good week. The doctor was upbeat in his assessment of my progress. Then he talked about how the remainder of the treatment will go, assuming we see good results of my next PET scan in a little over a month.

We also got the body temp issue under control. We did this by moving the kidney medication to earlier in the day.

I worked from home several days last week. This is a real blessing for me. I can do my job quite effectively from home. My team has members around the world, and we are well practiced at collaborating online.

I’m about done with my preventative antibiotics for this round of therapy. So far, I’ve managed to avoid catching anything and I’m feeling pretty good physically. I had a blood draw on Friday, and we’re hoping to see those results early in the week to see how my immune system is holding up. I’ve lost sixteen pounds in the past 30 days, but that doesn’t seem to be a concern right now.

For me, depression can be a problem even when things are going well. This is true for me now just as it was before my lymphoma diagnosis. Like so many other people, I’ve controlled depression  for years with medication, and it doesn’t often bother me. My episodes of depression don’t last more than a few hours. But when it happens, it makes me feel worried and trapped in my medical condition. Intellectually I know things are going to be fine.  And, I am held up emotionally by my faith, my family and my friends.

Thanks to everyone for your prayers, gifts, calls and messages. You are all helping me through this more than you may know.

It is one week after my first treatment, and it’s been an up-and-down week. Some days I felt almost normal, and some days I felt wretched. Nevertheless, I remain positive that my condition is heading in the right direction.

On the day after treatment, a few close family members came to our house for a belated birthday party. It was so nice to see them, and we had a wonderful afternoon together talking, laughing and eating cupcakes. But by early evening I was exhausted, sacked out in the recliner listening to the family laughing about the board game they played around the dining room table. It was a sweet time to reflect on how truly blessed I am.

The next day was not great at all. The flu-like side effects of chemo came on strong. I was in bed most of that day and much of the next. It got better, though, and the next couple of days were mostly without serious side effects. I managed to get some work done, but today the symptoms are starting to return.

The most frustrating side effects of treatment is my impaired immune system. It’s hard for me to have to stay away from work, friends, crowds and stores. I need to control my environment in order to stay away from exposure to colds, viruses, and whatnot. My doctor says that if my body temp reaches 100.4, I need to call him while I’m on the way to the ER. Any such fever probably indicates an infection that needs to be treated as an emergency while the ER staff figures out what is wrong.

The upstart of this is that I take my temperature often through the day. For the past two evenings my temperature at bedtime rose to 99.4 degrees. One degree away from the ER, I started taking my temp every hour. It backed down after a few hours, but sleep was elusive, and the fatigue is catching up with me. I may have been overreacting, but my temperature in the previous two days never got above 98.6, so I was getting worried.

I’m going in for a scheduled checkup tomorrow, and to get a shot to boost my bone marrow’s white blood cell-producing abilities. I’ll also start taking a round of antibiotics to ward off infections. We will see how it goes. As we go through each four-week cycle, I’m hoping that patterns emerge and we can develop strategies to deal with the side effects.

Many thanks again for the well-wishes, prayers, conversations, success stories, information, and offers of help. It warms my heart to know so many beautiful, kind souls. I expect to be taking you up on your offers over the next few weeks. I thank God for all of you.

photo credit: Fred: Prestone Anti-Freeze Thermometer Advertising via photopin (license)

 

Just a quick update that the rest of my first treatment went well. I had some side effects but now they are subsiding.

I woke up the morning after the first day of treatment feeling like I had the flu without the nausea or fever. I was fuzzy-headed, achy and short of breath. This was to be expected.

On my second day of treatment, I got another blood test before the infusion. The doctor said that the test indicated a first wave of dying cells and that the lymphoma “is already falling apart.” Due to the load this will put on my kidneys, he prescribed a drug to help them deal with the increased uric acid. I need to keep drinking lots of fluids for the next few days.

I was feeling pretty rough in the long drive home, but was very happy as soon as I got home, another big hurdle behind me. This morning,  I awoke feeling much better.

 

Photo courtesy Pixabay.com

Roslyn and I arrived for the first day of chemo this morning. We were forty-five minutes early, anxious to start. Things went well and it was a good experience, despite some rough spots during the long day. We will go back tomorrow for more fun.

After we arrived and I checked in, I was given a mixture of Tylenol and anti-nausea meds via the IV while visiting with my doctor and his staff. Many thanks go to them for going to bat for me with the insurance company, which allowed me to start treatment today. I was feeling like the process was going to drag out until next week. My doctor got on the phone and spoke to the insurance company to expedite approval of my treatment plan.

Back in the infusion room, Roslyn and I settled into a cubicle with a recliner, a chair, and a big window overlooking Santa Monica Boulevard, where we were to spend the next nine hours. The nurse started an IV of Benadryl to avoid any allergic reactions. Then, she started the immunotherapy drug. The amount to be infused is based on my height and weight. I needed almost a liter of the stuff. The staff’s approach is to start out slowly and watch for reactions. It wasn’t a long wait.

A few minutes into the IV drip, I was very short of breath and my face was flushed. This was a big worry because my planned treatment depended on using this drug. But the staff was ready and had a protocol to follow. They stopped the drip, ran some saline through the IV, and put an oxygen tube under my nose. The reaction passed quickly. After about twenty minutes, they restarted the drip at half the normal starting speed of 50 ml/hr. That did the trick. Each half hour they increased the flow a bit until by halfway through it was up to 300 ml/hr. We tried 350 but took a short pause when my lips and scalp started itching. We continued at 300 until that IV bag was empty.

After the immunotherapy drug was in, the chemo drug infusion only took 30 minutes. I had no reactions to that whatsoever. Yet.

Tomorrow afternoon after a required waiting period, I will return for another bag of chemo, talk to the doctor, and head for home. I will do it again about every four weeks through November. During this time and starting in the next few days, my immune system will be compromised significantly. I’ll have to be careful, monitoring my exposure to what I eat, touch, and breathe. I cannot afford to get sick.

Today is my sixtieth birthday. It seems oddly appropriate to start my treatment today. I am constantly amazed and so thankful for the many gifts I have so recently and continuously received: blessings of peace and comfort and mercy from our Lord; love and support from family, friends and colleagues; and outstanding medical care. I am truly the luckiest guy on the planet.

Treatment starts tomorrow morning! More later.

When the fog lifts, it’s like a second morning.

Today’s status: Very good! The preliminary PET scan results showed that though lymphoma was present in several places in my body, there are not any places that appear any brighter than the spot that was biopsied a few weeks ago. That means that I don’t have to worry that I’m carrying some other really bad stuff around inside me (hallelujah!) It also means that we can move ahead with treatment soon. I have two more appointments early next week, and when those are done, we should have a clear path forward.

PET/CT scans are interesting things. There are two parts. The CT (computed tomography) scan takes a 3D image of my body from my eyes down to mid-thigh using x-rays. Before the test, I sat in a recliner and drank a few paper cups full of white milky liquid designed to “paint” my gastrointestinal tract so it showed up clearly on the CT scan. The second part is the PET (positron emission tomography) scan which happens at the same time as the CT scan. To prepare for this test, I received a shot of glucose containing radioactive tracers. Then I sat still in the recliner for forty-five minutes. The tracers were carried by the bloodstream to the areas of highest metabolic activity, which in my resting state would include the tumors.

After resting, I climbed onto the movable couch that slides into the PET/CT scan machine. With a bolster under my knees and my arms stretched over my head, I laid still for thirty minutes.  An hour later, my doctor called me with the preliminary results. There was no ticking time bomb or large masses to be found. There were plenty of places that lit up, and these would account for my fatigue, shortness of breath and digestive issues, but nothing that eclipsed the previously-biopsied tumor. What a relief!

Since then, I’m pacing myself until treatment can begin. I move when I can and then rest. My mood is much improved now that we have a much clearer and less ominous view of what’s going on inside of me. My confidence is high. And I thank God multiple times a day for my many blessings of my friends, family, and the beautiful world we all live in.

At my oncologist appointment today, Roslyn and I told the oncologist’s assistant about the difficultly we’d had getting an appointment for a PET scan. The scan is an important tool to find the extent of the lymphoma so we can choose an effective treatment. We’d expected to be able to get one last week.

When the doctor appeared in the exam room a few minutes later, he was less than happy.

“It will require stepping on toes. Fortunately, I know which toes to step on,” my oncologist said. Two minutes later, I heard that I had a PET scan appointment for two days from now.

It’s going to be a busy week. Thank God for that. I’ll let you know what happens.

 

Photo by Pixabay on Pexels.com

“Hurry up and wait.” You know it. You hate it. Me too.

It looked like after the first visit to the oncologist, Things Would Happen. But, no. I expected to get a PET scan the same week. I spent the better part of last week trying to raise the nuclear medicine lab on the phone. When they finally got back to me, the next available appointment was two weeks away — a week and a half after my next doctor visit. I was hoping that (as the doctor suggested) we could finalize a diagnosis this coming week and start treatment a few days later. That’s not likely to happen. Without the PET scan, we don’t know how far the lymphoma has advanced and thus cannot finalize a treatment plan.

So, that’s where we are. In the meantime, I’ve experienced more instances of shortness of breath after exertion, and abdominal pressure after eating or exercising. I don’t know the cause, but rest and eating light meals helps the symptoms somewhat. All of this is very worrisome to Roslyn and I. We are trying to remain calm and not worry too much, but it weighs heavily on our minds.

This is not a journey we would want to take without such meaningful support. Our faith in God and our relationship with Jesus Christ are priceless. We lean on our trust in God and his benevolence for all his children, whether those children know him or not. We know he cares for us, and we see the evidence in the mercies he bestows on us each day, such as the hope and comfort from our friends and family that have previously suffered through such experiences and prevailed. These people have helped us greatly. Also, we are buoyed by prayers, kind words and hands-on action of our family, friends and coworkers.

When we see the doctor again this coming week, we hope to see a way forward through this traffic. We knew when we started that this process was not going to be simple or pretty. What we did not expect was the beauty we see in the many kindnesses from around us.