The UPS and DOWNS

Cancer is a wild beast….treatment I think is worse.  I know that all sounds pretty negative.  I wanted to be really up front and honest about how all of this is going.  I think people who aren’t or haven’t had cancer in their immediate family have no idea what it’s like.  I had no idea.  I sent a card, wished people well, said a prayer or two and hoped everything went well.  I assumed it did.  Little did I know what was happening behind the family’s front door.  Every family has a different cancer experience…here is ours for this week…

I planned on starting with Monday but I’m going to be honest.  I can’t remember the who’s, what’s and when’s.  All I know is the big highlights as everything runs together.

Monday we had a different PA.  It was chemo and radiation day. They decided to do the head MRI because Kramer is having such terrible headaches.  Kramer could eat soft food-but it was painful.

Tuesday a friend drove Kramer.  He had a talk with the radiation doctor and was told that he should start taking painkillers before he ate.  YES, it’s that bad for him to swallow.

Wednesday I took Kramer.  He had the MRI and late that night we found out the scan was clear and it wasn’t a tumor causing the headaches.  Kramer took the meds that were added to his list….forgetting that he needed to increase stool softeners and got himself into HUGE trouble.

We were almost to the ER overnight between Wednesday and Thursday.  Things weren’t right.  But after waiting it out until morning, things got better.

Thursday Kalissa took Kramer.  Swallowing was worse than ever.  Kramer and Kalissa tried to stop at a couple garage sales but after a few, he was way too tired.  The mind wants to…the body can’t.

He’s on oxygen 24 hours a day now.  He’s completely wiped after taking a shower and needs to spend time in the chair to recoup.

Friday Kelli was here.  We had a driver lined up to take him.  Kelli was going to help me do childcare and we were going to hang out.  Kramer woke up terrible.  Slowly he started getting better but by 10am we knew things weren’t right.  He walked out to the kitchen and almost passed out.  We had to grab a chair and get him to sit for awhile.  We ended up calling in they asked that we come in right away.  This, of course, sounds very simple in words but in life, it’s not.  Kelli was suddenly in charge of the kids…I was changing clothes, throwing things in the truck as I didn’t have lunch and I can’t eat anything with salt in it or dairy so basically fruits, veggies and meat so I HAD to pack something I knew was okay. (remember I have that full body scan next Friday and have to be on the special diet) Parents had to be notified that I was leaving and Kelli would be here….what a mess.  Kelli and I were both running around.  Thankfully none of this phases the kiddos.

Kramer saw the doctor.  She lined him up to have 2 liters of fluids.  She also started what is needed for Kramer to get a feeding tube.  That’s going to happen on next week….likely on Tuesday.  YES, that’s what this has come to.  A man who previously took no pills is now taking 22 pills a day.  Kramer is disappointed but what’s a person to do.  We have to do whatever it is that will get us to the other side of this.

He was doing so much better physically after the fluids by the time we got home so he was hopeful.

Today we were up..Kramer was doing pretty good.  We went to a garage sale.  He drove up town three blocks to the farmer hang out in town.  He drove back home.  I was so hopeful for a good weekend.  Then BAM.  He went down and took a shower and came back up TERRIBLE.  He is in TERRIBLE pain with his neck.  I’m doing the whole debate on whether I need to try to get him to the ER.  Kalissa has been over and checked him out.  He’s in the chair-heat pad on his neck…getting up out of the chair is a painful for him.  I have no idea how this all came about.  Neither does he.  I have no idea if there is something pinched…is this somehow related to chemo-to radiation.  AH…

Both of us are so disappointed.  We so hoped for a good weekend…a good day…a good half of day.

We constantly are now on the “do we have to drop everything and leave mode”.  I am frantically trying to get as much done as I can today so …”just in case”….just in case of exactly what I don’t know.  I don’t know what’s lurking around the corner but I’m sure something is.  I think we’re both starting to feel a little bit like one of those Friday the 13th horror shows when you start to hear the music and know something is going to be bad…you just don’t know where the bad thing is coming from.

We’re okay.  But just okay.  We aren’t fabulous.  We’re wearing our life vests and that’s what’s keeping us afloat but we are afloat and that’s all that matters.  Today I’m telling you the bad…what’s happening behind the closed doors of people struggling through cancer treatments.  On another day I’ll tell you the good…because there is good too.  Today is one of those days, that the shadows are looming a little too heavy.   I have stitching planned for this evening regardless of how much I do or don’t have done here in the house.  That is just what I need….but seriously, I hate to even write that, as I still feel like a trip to the ER just might happen yet…that’s our house as of 5pm Saturday, April 27th.  By the way, we got about 4″ of snow today too.

UPDATE FROM KELLI—Mom called me just before 7 and told me they were headed to the ER.

43 thoughts on “The UPS and DOWNS

  1. Liz

    A lot of us have been where you are, Jo, so we feel your pain, the anxiety, the fear… All I can say is to cling to the Lord and each other. We love you and your family

    Reply
  2. Ellie

    My heart goes out o you and your family for what you’re going through. I wish I could do more than keep you in my prayers because I’m sure you feel as helpless as I do.

    Forgot to tell you this morning that your landscaping looks great!

    Reply
  3. Toni Wood

    Sure wish I could say or do something that would help but it’s not in my power to do that. Just remember we all have you and hubby in our prayers and thoughts.

    Reply
  4. Elaine

    Jo,
    My heart aches for you and Kramer. I wish I could say some magic thing to make you feel better. Know that we are your friends and care for you both. I will pray that this terrible time will pass quickly and good days are just ahead.

    Elaine

    Reply
  5. Mary Etherington

    Oh, Jo, my heart is breaking for you! I can do nothing to help except send you a check which is what I’m going to do so you aren’t having to worry about that. I am going to put you in my pastor’s prayer list – he’s such a kind man and every Sunday when he asks for joy and concerns, I don’t have the nerve to stand up right in the front of the congregation and tell them about you.

    Reply
  6. Joy

    So sorry! You have all that plus the mental anxious anxiety! You sound like me when my parents were still living and struggling with their health! They lived 25 miles from me….hospital is 25 miles from me on the other side. I sit with my dad at that hospital … bring him home…50 miles and drive to my home 25 miles! Then I just get in bed and the er in their home town calls that mom is in the er with ? And I said…. oh! S***!
    Plus, my only sister in Arkansas couldn’t be bothered with their health stuff because it was too stressful! I’m not sure how I did it…but, I have never regretted one second I spent with them through those trying times! I’d do it All again in a heartbeat! Love you!

    Reply
  7. Martha Taylor

    Jo, through all of this, know God loves you all. We are praying for you a lot. Know you are never alone. Thank you for all the updates. Stay strong.

    Reply
  8. Janet Beyea

    I am so sorry you are all going through this—it is so similar to me because I also cared for my husband who had esophageal cancer. I felt like I had entered a different world filled with doctors, treatments, and emergency room visits. I would look at people going on with their normal lives, and I could barely remember when I had a normal life. But even in the midst of everything, I remember little miracles— the right doctor who was there at exactly our time of need, the kindness of strangers, the quiet moments of love. I hope these miracles will sustain you through this horrible time.

    Reply
  9. Bobi

    Lots of us have been there and sadly, there’s no way to go around it, you just have to plow through it. With your strong will and positive attitude, I feel sure you’ll successfully make it to the other side. I can’t wait to smile and cheer with you when that happens. Take it minute by minute if you have to and remember you have lots of anonymous supporters out here in blogland that are waiting patiently for a happy ending. Stay strong! And may God richly Bless all of you.

    Reply
  10. Linda L

    Everything sounds so trite when responding to your needs but try to take it as it comes, deal with it an hour at a time. Give your problem and feelings over to God. I too wish I were closer to help. I think writing it down and sharing is helpful for you and others. You are very good at making observations and laying things out. I hope as you say you find what you need to catch your breath.

    Reply
  11. laurie

    Jo, I wish I was close enough to be a help to you. I think of you often, and hope and pray for you both. Cancer is a scary beast, but you have your own army at your back sending you prayers, good wishes, and lots of hope.

    Reply
  12. Linda

    Jo …tears and prayers for help you get through this….My husband is in the hospital with sepsis….his white blood cell number isn’t coming down very fast…not fun times….sometimes you tie a knot in the rope an hang on..

    Reply
  13. Mary Ann Mettler

    That is quite the struggle. So sorry to hear this. One moment at a time. You are quite the troopers. I appreciate your transparency. I think and pray for you often.

    Reply
  14. Ruth

    Scary, Scary, Scary!!! Hope that you DON’T have to go to the ER tonight. Glad that you are thinking of your bodily needs as well as Hubby’s. A feeding tube will be better, less pain because no swallowing.
    “This too shall pass.” (cough, cough)
    So grateful that your daughters can help with the childcare.
    4″ of Snow??!! Told my husband that the blogs I follow in the Midwest are talking about snow this weekend. Thanks for the update and I’m sure it will melt very quickly!

    Reply
  15. Tama

    Dearest Jo. One never knows exactly how much water is in the well. I believe the Kramer well is deep and wide and plenty. So you all just keep sending the bucket on down. Yes, in faith I am sending more prayers. Take care. Tama

    Reply
  16. Shirley

    Praying that soon the good days will outnumber the bad days. I know how difficult and heart wrenching it is to see someone you love have to endure this.

    Reply
  17. Elaine

    Jo, I’m so sorry about the ordeal you and your family ate going through. Cancer is a hateful beast and treatment is very often very hard. I can’t help in any way, except by prayers and positive thoughts. I’m so glad you have a strong family that helps when needed. That is such a blessing. Take a few minutes out for YOU. What ever it takes. You have an army of prayer warriors out here cheering for the Kramer’s.

    Reply
  18. Maureen

    Praying for Kramer right now, as ye is probably still at the ER. Praying that the doctors will have wisdom and insight into what is going on.
    Praying that you will have the strength you need, Jo.

    Reply
  19. Robby H.

    I’ve been blessed to only have a couple of friends who have dealt with this, but they were honest about things. I think that honesty is helpful to those that want to support you so they may better understand. And, you’ve reminded me it’s time to send a friend another note of encouragement. Her problems are different, but they are on a long recovery path and I’m trying to be that friend that doesn’t forget things are still hard for them many weeks later. Prayers for you and Kramer at the ER.

    Reply
  20. Sandie

    I Don’t often comment, but needed to let you know that I am one of the many silent supporters here that check the blog morning and evening to see how things are and send my thoughts your way. Not just for you and Kramer, but your children and their families also. Cancer is the disease that just keeps on giving… it affects the fighter and everyone that loves them. May you all be strong when you have to be, and aware enough to know when you need to let someone else be strong for you. I will keep sending all the healing thoughts your way and wait for the day you can share the good news that remission has been achieved. I’m thinking positively for you. ❤️

    Reply
  21. Debbie Burgess

    God bless you all, Jo. You’re in my prayers. I wish I lived next door so I could help you with taking care of the kiddos so you and your girls wouldn’t have so much juggling to do.

    Reply
  22. Linda Hodges

    Oh Jo I feel for you. I know you are going through it. Lost my Mom to cancer but that was before a lot of treatment you have now was available. It was terrible to see her going through it. Unfortunately, at the time I lived five hours drive away so wasn’t able to provide the support that I would have wished for. I have now been suffering in a different way, my hubby hasn’t been too well for a while, suffering from breathing problems together with heart failure problems. I took him to the doctors Thursday a week ago and they sent us straight to hospital as his breathing was a little fast. They kept him in but unfortunately, two days ago, he passed away. It was the most devastating thing to happen to me in a long time. I was just not expecting it. I am keeping my fingers crossed that things pick up for Kramer soon. Perhaps he is trying to do too much too soon with the landscaping, driving etc. The body can only take so much, particularly when dealing with the ravages of cancer treatment. Anyway, I am still praying for all your family.

    Reply
  23. Donna T

    Cancer is a so hard. My mom and sister went through it. You never know what is going to come at you with cancer. You are very blessed to have your family close to help. Still praying for you and your family!

    Reply
  24. Candi

    Oh gosh. You guys really need a break. Cancer is evil.

    Sending you lots of love, hugs and prayers to get you through.

    Reply
  25. Donna

    Jo, every family has its own journey with cancer. Everyone’s is different. We don’t know why but that’s the way it is. Never feel you’re on the journey by yourself or that it’s just your journey. I know many of us are just in the background keeping you in prayer but we are there.

    Reply
  26. Judy

    Have been there and lost our son. I pray for you all. If you can manage a little time, please look up /Dr. Eric Zielinski. I wish I would have know about him but he is teaching many things to help cancer patients and God’s blessings. Keep your hope strong. Sending love and lots of hugs to you all.

    Judy

    Reply
  27. Kathy

    Jo, I know you feel alone at this time but you are not. My husband was diagnosed September 11,2018 with lung cancer also. Thankfully he did not have to have chemo but he did have radiation and it did the exact same thing to him that it is doing to Kramer. You are doing the right things to help him. It was hard for me to see my vital husband sit in a recliner all day and not be able to do anything. It really hit me hard when the dr ordered him a handicap tag for the car. I am happy to say that he is now in complete remission and was even able to take out his motorcycle this week. One suggestion is to see a palliative care specialist.
    Prayers for you and your family.

    Reply
  28. Debbie Myers

    Jo, my heart goes out to you and your family. My prayers for all of you are scattered throughout the day. Cancer is cruel. But because of your honesty, your blog readers are supporting you and lifting you up in countless ways. We want to help, to ease your burden during this difficult time. You have no idea how much you help me and others through this blog and we are happy to give back to you in whatever way we can. As we say in the South, Bless your heart!

    Reply
  29. Karen Hough

    Hi Jo,
    I remember it well with my dad. He had lung cancer . Chemo & radiation treatments. Yes, they tell you it may get hard to swallow, but everyone is different. My dad had 40 RT treatments. He didn’t need a feeding tube, but it was really hard. My mom & I pushed fluids on him like it was no tomorrow! Constant drinking. He made it. But it doesn’t clear up right after the RT. No…the burning of the esophagus has to return to normal and it takes time. A feeding tube might be the best thing for Roger right now.
    It, it will help for now and later. He needs hydration. It’s so important.
    This chemo/RT this is no fun. I’ve been on both sides. Being an oncology nurse and a daughter of a lung cancer patient. I forgot about the swallowing though, it was so long ago. I never worked with lung cancer patients in my practice.
    I’m so sorry you are going through all this. It will get better. The end of treatments is on the horizon.
    Roger, you are doing an excellent job. It’s tough to hang in there and be “normal “ when you don’t have the stamina. It will return.
    Heads high. God is with you both. Sending hugs and thoughts. Love you both & your family.
    Karen

    Reply
  30. Christine in UK

    Dear Jo, I’ve been enjoying your quilting posts for some time.

    Having gone through a similar experience. – no ones is the same – last year I am sending love, prayers and positive thoughts to you and your family. Hang on in there.

    Reply
  31. DEBI L ANDERSON

    Jo I am so sorry for you husband being sick. Mine went thru 3 years of chemo, but no radiation. It has now been 13 years since he had it. So believe there is hope. One thing you might check into for him are the pain patches. They work to some extent, but they beat nothing for the pain. Also don’t worry about using the ER as back up. Sometime that is the best bet. I will add you all to our prayer list. It is so good that you have some help. I had none, except for the wonderful staff at the cancer center and the hospital. Fantastic people. If at any time you don’t feel he is getting the best care, speak up.

    Reply
  32. Cindy F

    I’m so sorry to hear of the “downs” you are going through right now. You’re right when you say people don’t really know what cancer is like unless you’ve had an immediate family member go through it. And even though our family has been through it 3 times (twice with my son and once with me) it’s not been like your experience. We had the “luxury” of my adult son being admitted into the hospital during his 3 rounds last year for his second bout of cancer. It is less worrying when you know there is immediate help should something happen. It’s hard being the responsible person making decisions about something with which you aren’t completely familiar when situations come up too. It’s harder still when you want to do something to help alleviate the pain and symptoms and there really isn’t anything you can do other than little things. In the end it’s all about getting through treatment and waiting. Praying helped me. Knowing others were praying helped even more. Continued prayers for you and Kramer.

    Reply
  33. Diane in Wa

    Jo and Kramer and family. Just wanted to let you know that I am another blog fan that is praying for your family. I just want to ditto all the good thoughts that others have left for you.

    Reply
  34. Sharon Runyan

    I definitely understand what you are going through. My cancer treatment journey was 5 years ago. A couple of treatment days my daughter & son-in-law had to almost physically carry me to the doctor. After almost every chemo treatment I would run a fever—101-102—& wind up at hospital getting blood work done to check for infection. The bathing I understand as well. Absolutely exhausting.
    I think the evert day drive to treatments for you is just as exhausting. You have very little time yo rest.

    As trivial as it may sound, I pray for your family daily. Never give up.

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *