Top 75 cancer tips — Making Treatment Easier

Im so excited about these tips that I got from a friend in the Facebook group. While it makes it more “real” it also prepares me a little bit more for the storm.

Bill's General Thoughts

Me in my hospital room. Me in my hospital room.

Top 75 Cancer Tips for Burkitt’s Lymphoma, But You Can Use Them for Almost Any Cancer Journey. Really You Can

Tip #1 – Take a tape recorder to your first oncology appointment, The information comes so fast it is impossible to take it all in the first time around. The doctor won’t care – he’ll probably appreciate it.

Tip #2 – Only wear t-shirts with pocket and wear them inside-out so you stuff your catheter lumens in the pocket so they’re not jangling and tugging on stuff.

Tip #3 – For PICC lines Instead of gauze get some old athletic tube socks and cut off the toe and slide that up your arm to secure all the tubing.

Tip #4 – For those of us that deal with health insurance. Most insurers have a case management office that handles dangerous illnesses like cancer, heart disease…

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Coming to Terms with Cancer

In this together!!

In this together!!

Today Owen came home from the hospital. He had a strumectomy done to remove the 12 cm sized tumor growing in his chest–a malignant thymoma. When the CT scan was performed a month ago, the oncologist said it looked like it was in stage 2 and it was the size of like a tangerine. But this one was the size of a grapefruit, the largest the thoracic surgeon had ever seen in his career (and he has been a surgeon for like 40 years!) and it had grown into stage 3 cancer–invading his heart.

So they couldn’t remove all of it. Had to leave the part of the tumor on the heart alone. It has left an exclamation mark scar on his chest. I knew that meant either radiation or chemo or both. Deep down, I was holding out for just radiation. But sure enough, on Wednesday, the oncologist came in and explained to us the treatment plan in his thick Hebrew accent. We held hands hearing about all the chemical combinations and the side effects–  hair loss, fatigue, nausea, weight gain. He used words like “aggressive” and “kill everything” to explain the process but encouraged us with words like “you are strong, you will be able to handle it.” Supposedly the research suggests that with the chemo combination  often called PAC, performed every 21 days for 4-6 sessions and included with it a month of daily radiation at UCSD, Owen will have a 80-90% chance of being cured.

I don’t like those numbers. I want 100%. I can’t even imagine a world if that 10-20% chance comes crashing through our lives. That would mean more chemo. More radiation. More suffering.  And what if, it is never cured? Then what? I don’t even want to imagine. So I cling to what Owen says.

“You know the strongest man you’ve ever met going through Chemo, doctor?” He said, matter-of-factly.

“Yes,” the doctor replied, questioningly.

“That will be me, doctor.” I loved that.

Given we were already mentally preparing for this talk, however, it didn’t come nearly as emotionally shocking as it did when we were in the hospital a month ago, and the first doctor from upstairs came down and suggested the word Cancer with her concerned eyes. We were not expecting that. That was the moment that slowed down, where like in the movies, the sound quiets and all you see are the characters’ expressions as they hear the grim news. The doctor pulls out the documents and solemnly words the news. The wife stares blankly at the doctor and puts her hand on her husband’s knee. He leans down and rests his head in his hands. And you know. You as the audience know they just heard they’ve got cancer. But when you are the one in that scene, it feels like a dream. At least it did for me. Is this real? This wasn’t part of my life plan.

But still, I was emotionally jarred by the official news that chemo was next. It made everything all the more real. Even more real than the surgery. This is what I think of when I hear of cancer. I think of the chemo–the monster that kills cancer patients faster than the cancer can kill them–but somehow, doesn’t kill them, just leaving them bald, frail, weak, and in bed. So after the doctor left the room, I went into the bathroom and cried. Cried for my husband. Cried for me and for the kids. I don’t want to go down this road. I don’t want to have to see my husband in that state. There are many more tears ahead and I don’t want to cry anymore.

Today I had time to process it a bit more. In the quiet of the day as my husband recovered on the couch and I paid the medical bills we had already accumulated with the blessing of donations in our GoFundMe Campaign, an intense chest pain came over me–anxiety. Almost an attack. But I prayed and asked for prayer. I decided–no cleaning, no added stress. Instead, I spent an hour designing a banner for a buy, sell, trade group I’m co-administering on Facebook with a couple of close friends. It was medicinal. I need a creative outlet. In the end, I think today’s anxiety came today of all days and not earlier because my body is finally having time to just feel. I’ve been in survival mode for a while. I just hope my milk supply goes back up. The baby is now drinking mainly formula, because 2 weeks ago, once Owen started getting another flare up (chest pains, nausea, night sweats, fatigue, weakness, poor appetite) my supply plummeted. In my mind, I felt like I was so strong. But the body knows. Survival mode kicked in. And that means less milk for my baby.

wedding handsOwen went through it too–negative emotions I mean. Some friends of ours, the Pallottos, came over tonight and took care of the kids for a couple of hours, asking us to go out for a while and just be together. We did. It was good for us. We went to Red Lobster and picked at our crab legs between holding hands, talking, and sharing silence. We laughed. We even cried. My husband’s lips were ash and he didn’t have much of an appetite. He broke down a couple of times unexpectedly. We held hands and for the first time in our marriage, remembered that in the big scheme of this life–it is the two of us in our family who are one. Our kids will grow up one day and leave and they will not be with us. It will be us two. I will be with him through this cancer. And he, God willing, will be with me when I experience my big issue in the future, whatever that may be. It became so much more real tonight. So this is marriage. This is sickness and health. And strangely, it brought me comfort and an overflowing surge of love. I love him. I love this man. And he is mine and I am his till death do us part.

I drove us back home afterward, and felt a poem forming in my mind about my mixed emotions– sadness, anger, and yet love and joy still.

I told Owen–“I have a poem forming in my mind. It’s called the Paradox of Pain. You know–I want to laugh, I want to cry.”

Then Owen replied quickly, “…I want to stab you in the eye.”

“Yes!” I cried, “You know!”

psalm 56 3I write this blog because I believe in being translucent. I don’t think we can truly know each other and love each other unless we allow ourselves to see one another as we truly are. Listen, I know the truth. I know God loves us. I know he has a plan for us. I know he will use this for good. I know he will be there with us through it all. I know this. And knowing that certainly gives us a hope and a strength, I could no way have on my own. But it doesn’t mean that I want it. I don’t want it. I want a life of bliss and no suffering.

Ironically, I say that knowing that it’s silly and knowing that it is through our suffering that we become strong and better people, which I want too. I want to grow closer to Christ. I want to be stronger. I want to be more compassionate toward others. I want to grow closer to my husband. I want to appreciate life more and take less for granted. I want all of that too. But you can’t get all that growth, without some pruning. Pruning cuts and it pinches and it hurts. It hurts! But I do know that the Master Gardner has a beautiful plan for his garden. And we get to be a part of that plan. I do trust in that. And while today was a tough day and not the last of those tough days, I know that because of what I know, there will be many great days too.

Thanks for reading. If you have gone through cancer, how did you deal? How did you come to terms and move forward? Would love to know more of your stories.

What Cancer is Teaching Me

#LifeWins

Owen at the hospital on May 4th.

As most of my readers know, on May 4th my husband was diagnosed with cancer. We learned after some tests that he has stage 2 Malignant Thymoma. He has been in a lot of pain. He has lost a lot of weight. And so we eagerly await the surgery needed to remove the 10 cm sized tumor in his chest.

On the other hand, we do not look forward to the likely chemotherapy that he may have to take prior to the surgery or after.

Either way, given that we have an HMO, everything has taken forever to move forward. He finally has his appointment with the surgeon this Tuesday, June 2nd. So we’ve had 1 month of waiting. And during this 1 month, Cancer has taught me 6 Things:

1. That God loves us, and will be with us through this fire.

We know that cancer is a byproduct of living in a fallen world. God promises to redeem this world and one day, after all who will come to him come to him, he will recreate the Earth, and there will be no more death, crying, sadness, or pain because all the old ways will be gone. But until that glorious day, we get illnesses. But God promises to those who love him and are called according to his purpose, that he will be with them by either keeping them from the fire, or being with them through the fire. I don’t know why Owen has been allowed to have a type of cancer with a good prognosis while others do not. I do not know why Owen has been allowed to have cancer when others do not. But I don’t doubt God’s love for us or any other cancer victim for that matter. God love us all so much he sent his son to die on a cross, so that one day, we can rise again and live forever in his presence no matter how we have rebelled against him in our lives. We can put up with Cancer knowing what awaits us in eternity. But even here in this age, I know he can use Cancer to do good. And that he plans to do that with us. He is allowing it, to do good in our lives.

2. We have an amazing network of people in our lives.

Honestly, it has been quite humbling. You all make me want to be a better person. You have reached out to us and blessed us more than we have ever helped and blessed others. I’ll pray. I’ll make an occasional meal. I’ll make a small donation here and there. But that’s about it. I mean we have people who are not even friends reach out to us. One person, for example, whom we have nothing in common with and with whom we have even heatedly debated our differences reach out and not just give, but give generously. God has shown his love for us through all of your amazing and wonderful support. The calls, the texts, the food, the house cleaning, the donations, the prayers, the hugs…we feel it. Thank you, to everyone who has reached out to us.

3. My husband continues to impress me and I am falling even more in love with him.

The way he has endured his pain. The way he continues to work. They positive attitude he maintains. How honest he is with me about what he is going through spiritually, emotionally, and mentally. The amount of compassion he has developed for others with cancer or who have other health conditions that need medicine. I’m in awe of this man. And I’m honored to be his wife.

4. To show more grace toward my husband.

In the end–no matter what he has done or hasn’t done to irritate me, he is My Love. And I would be devastated if I lost him. When faced with the reality that without medicine, my husband would die from this cancer inside him, nothing he does or doesn’t do is worth fighting over, or pouting over, or holding bitterness against him. I love him. I’ll take him. Flaws and all. I hope he feels the same way about me.

5. There are things you shouldn’t tell people who have just told you they have been diagnosed with Cancer.

I don’t think I would have known these words until I’ve been on the receiving end (next to my husband, of course). We know people mean well. But man, some of us just don’t think. I hope I’ve never said some of the thoughtless things others have said to us. When it’s all said and done, I’ll make a funny post about it. 🙂

6. I’m stronger than I thought I was.

I can only guess this strength comes from God because I don’t know this new, strong version of myself. I’m a crier. I used to cry at least once every day about something. But God and my husband have been working on me the last 6 years, teaching me to have self-control, teaching me to trust God and not be so easily overwhelmed or offended. I think its been all in preparation for this. We are going to get through this. I can be strong for my husband. He needs me to be strong.

So what about you? For those of you who have struggled with cancer or who have watched a loved one through the illness, what did you learn? I know we are just at the beginning, especially if Owen does get chemotherapy.

Waiting for an Official Diagnosis for My Husband

Owen Hemsath may have cancerMany of my friends and family know that we have been going through a roller coaster ride of stress the last few months when it has come to my husband’s health. Over the last 2 months, he has had almost daily bouts of the following symptoms:

  • Chest Pains
  • Difficulty Breathing
  • Fast Heart Rate
  • Fevers
  • Chills
  • Night Sweats
  • Nausea
  • Weak Stomach
  • Light-Headedness
  • Foggy Thinking
  • Fatigue
  • Poor ability to taste
  • Weight Loss

We went to Urgent Care a few weeks ago and they noticed a fever and took an X-ray to look at his lungs, only to find something funky looking around his heart. So we were sent to the ER.

The ER doctors gave him an EKG, which turned out abnormal. Then did a series of tests to see if he was having heart problems. The blood tests came back fine. We were sent home.

Then the next day, they called us and said, “We never saw that you had an X-ray of your chest. Your heart does look strange. Please see a cardiologist.”

Due to insurance issues and paperwork, we didn’t get a chance to even see his primary physician until it was a week and half after the ER visit. During that week, his stomach was really bothering him, so he mainly explained those symptoms, but did explain that the week prior it was his chest. He did not mention his fevers because he didn’t make the connection. The doctor then diagnosed him with acid reflux and said that he’d schedule him with a CT-scan the following week to just rule out the heart and lung issue, but he was not concerned. He wanted to see how Owen felt after being on Zantac a few days.

Well the Zantac wasn’t working. In fact, Owen’s symptoms persisted and even got worse. Now his chest pains were back again in addition to his stomach. After another night of drenching night sweats and watching him writhe in pain on the couch with another spiked fever, I called the doctor and desperately asked for advice. He said to go to the ER and get a CT-scan of his chest, stat.

And so we did.

X-Rays can identify initially if a lymphoma Mass is in your chestThe ER doctors were concerned. The CT scan showed a 10 centimeter sized mass near his heart and what looked like increased fluid around the sac of his heart from what they saw in the X-ray. They sent Owen upstairs to stay the weekend and get an ultrasound and biopsy on the mass. They also gave him numerous blood tests to see if he had some sort of infection.

We prayed. Everyone prayed. Facebook prayer chains were flowing quickly.

The next morning he got the ultrasound. That was Sunday. Then finally, on Monday, he got his biopsy. That same day, and Oncologist came to Owen’s room, and said with a matter-of-fact tone, “You have lymphoma. We are going to kill it. And then you will live a long, healthy life.”

Owen looked up the disease. Textbook. All his symptoms. All textbook lymphoma. Then add the CT scan to find the mass in his chest. It seemed certain. He had lymphoma.

Hearing this news, gave us both a very strange emotion. Given that it was a highly curable cancer, we felt sort of relieved. They had an answer to his pain and suffering. And not only was the answer something that wouldn’t kill him if treated, it would actually stop his misery. Yes, it is devastating to hear you have cancer. But when it is a curable cancer, it is almost better than not knowing what is wrong with you, writhing in pain, and wondering if you will suffer this way your whole life.

So that was this Monday. Since then all the blood tests show no infection, otherwise. So it makes absolute sense. There’s no other explanation.

It is now Thursday night as I write this.

This week, we have been processing cancer. And we have been waiting on the official results of the biopsy, expecting to learn from it, not that he had it, but whether or not it was Hodgkin’s, the highly curable lymphoma, or Non-Hodgkins lymphoma, the still good, but not as highly curable lymphoma.

In the meantime, we have been flooded with love and encouragement from our family, friends, and extended friends on Facebook. I cannot believe how much support we have received. Truly a humbling experience. And since he was admitted into the hospital last Saturday, he has been covered in prayer by not only our family and close friends, but extended friends as well. We’ve heard that Owen’s name has been added to numerous prayer chains all over.

So today, while I was at work, Owen called and said the Oncologist called and wanted him to stop by his office in Temecula to go over the results. It couldn’t have been more perfect of timing because I was in Temecula and not in my classroom. I was able to step out of the meeting I was in and go meet him.

“Oh, you,” The Oncologist said to Owen with overwhelmed eyes and an exasperated voice, when he saw him in the waiting room. “I’ve been going over your case all weekend. Come in, Come in.”

Owen walked in now scared that its way worse than they thought.

“We don’t really know,” he said. “We need to do more tests.”

When I heard these words, I was filled with excitement and relief, and yet, strangely, disappointment. I know that sounds strange, but it goes back to seeing my husband suffering the last 2 months and knowing there is a mass in his chest. I want to know what my husband has, and I want it to be something that is curable.

tumors on the thymus could mean lymphoma or thymomaSo now Owen goes in for a PT-scan. Hopefully as soon as tomorrow. Maybe next Monday. It will see if there is malignancy in the mass outside of the area where the biopsy was taken. This will tell us if there is another type of cancer that is happening, or something benign. And what to do from there. Most likely take a larger biopsy from the area that lights up in the PT scan.

Whatever it is, we know he has been miserable with the symptoms we listed above. He has something in his chest and it is hurting him. This is something no one wants to live with. There are times the pain is so bad, it is debilitating. Whatever it is, I just want it to be cured. I want to see my husband live a long healthy life.

So we wait.

Again.

I hate waiting.

Do you know what I’m praying for now? I’m praying that mass is gone when they do the pet-scan. I’m praying God has cured my husband.

And if he chooses not to, that the doctors can figure out what he has, and help him get better.