Well..I have medical news on TWO fronts. Kramer first:
This weekend was tough…Monday was tough too. We talked to the doctors about it all. They asked about symptoms. We answered.
We are to the point that Kramer can no longer eat solid food. What has happened is that the radiation hits his esophagus and has given it a “sunburn”. It makes swallowing food very difficult. Normal food is more of less out and he’s living on cottage cheese, yogurt, puddings, Boost drinks and other similar items including McDonald’s chocolate shakes.
Food was a big way of life for him…for all of us so this has been hard but he’s been a trooper. We asked how long this could last. We were told that in would likely last a few weeks AFTER radiation is done. The last radiation day is May 8th…so asked if he’d have some relief by June 1st…and the answer was yes. That is a light at the end of the tunnel but seriously, that’s a long tunnel.
They gave him fluids with his chemo today…no surprise, with the swallowing issue, dehydration is now an issue too.
Our biggest concern of the day is headaches. Kramer has had a lot of headaches through this whole ordeal. They are “rams horn” headaches. They start in the back of his skull and radiate around to his temples. He has them regularly. Last week when he got steroids on Wednesday and Thursday, the headaches were gone. Friday and over the weekend, the headaches were back. This has prompted the doctors to order a head MRI. They was to do it to make sure that there is no brain cancer. Yes. We had one before but that was back in February. We were told things can change. We were also told that chemo even if given for lung cancer will blanket the body but not the brain. So…that is Wednesday’s added event, the head MRI.
Besides all of that about three medicines are either going to be used more of or less of. I finally told the doctor, this ALL has to be written down. This is why you should NEVER let a cancer patient go to appointments by themselves. NEVER!
Also…Kramer isn’t always as truthful as he should be with doctors. They asked if he was dizzy. He said only when he gets up. That is not true. He’s dizzy much of the time. He’s compensated for it and now doesn’t realize he is. It has become his new normal. Then I tell the doctor no and give examples and then Kramer says…Ya. I guess I am. It’s so hard. I almost feel like I am betraying him in the doctor’s office. AH!!
Chemo and radiation are done. As of me writing this, we have 12 radiation and 2 chemos left. When he got this last radiation the tech said, “Ah, you look pretty tough.” He does. They joked about it and then she said, “Ya these next two weeks or so are going to be really hard on you.” UGH. We know that and she didn’t say it meanly but UGH. We were kind of hoping this weekend was only a setback. We’re beginning to wonder if it’s the new norm.
Now, my report…I’m warning you. Grab a cup of coffee. It’s a saga too….
You might remember last week I saw my doctor. The next day I waited as a checker and got in to have a PET scan done.
The results of my PET scan are nothing abnormal. Nothing that wasn’t different from the last scan. So now she wants me to do a whole body scan.
If you have a been a long time reader of the blog you know that I’ve had these before. I have to be on a diet for a couple weeks that is as free of iodine as I can be. Then I get shots for two days in a row…the next day a low dose of iodine. Then the next day the scan. It’s not that big of deal at all BUT, we live about 2 hours from anywhere that it can be done.
The doctor from Mayo had her nurse call me and schedule it all for the week of May 7-10th. The call came on my cell phone just as we were leaving Kramer’s appointment in Lacrosse. The nurse was talking to me telling me this was this day and that was that day. She kept talking about my “therapy” that I’d get on Friday. Hmm. What therapy? I didn’t understand at all. After about three “go-rounds” with her I finally figured out she was talking about getting the FULL Radioactive Iodine Treatment. The doctor never said anything to me about that even being a possibility. Remember how she said something about “letting the cancer grow”. I was so frustrated and felt so uninformed. I’ve told you before that I don’t “love” this doctor. She’s okay but no “love” on my part.
I hung up the phone and started driving home. Kramer and I started talking about it and decided that since being sent to Mayo, little in my thyroid journey has changed. I was originally sent so that a needle biopsy could be done on a “lesion/scar tissue” in my thyroid bed. That was done. It was clear. From there the Mayo doctor took over my case. She did do a Chest CT which my Lacrosse doctor didn’t do but other than that, EVERYTHING is the same.
Me having my stuff in Rochester, and Kramer going to Lacrosse and us trying to coordinate it all, it’s ugly. Kramer will still need to get to chemo and radiation while I would travel to Rochester….
So. Kramer and I talked about it and I decided to make an appointment with my doctor in Lacrosse. I love her. I love Lacrosse’s Gundersen Hospital and Clinics. I value her opinion. Happily an appointment was open for TODAY at the same time Kramer has radiation.
If it’s okay with her and I feel good after our visit, I’m going to request to go back to her and do my doctoring at Gundersen. That would be a HUGE relief to us all. Not worrying about the driving and logistics would be one less thing for us and being back with a doctor I like would be nice. After all, she really only moved me on so that the needle biopsy with the flush could be done as that wasn’t a procedure they do at Gundersen. So..I’m hoping this could all work. I’m hoping it’s the right decision.
More tomorrow.
Great news on your part. I’m praying that you can be moved back to the doctor you love. Having a team you can trust and respect makes things much easier.
It is so difficult to keep everything straight. I take a notebook but still miss things. So when you spoke up for Kramer that’s a good thing. Don’t EVER feel bad like you are betraying him. Once it’s out I’m sure he appreciated you speaking up. I know I do. And yes we adapt and just go with it when things happen so we do think it’s the norm when In reality something has changed.
My heart goes out to you and your family for all you are going through. Please know there are lots of people here in cyber world praying for you and your family.
Love, hugs and prayers coming your way.
I hope switching back to your doctor in Lacrosse works out. It is much better to feel comfortable with a doctor especially when dealing with ongoing issues. Good luck!
Jo, it’s always the right decision to advocate for your health and Kramer’s too. Remember, he’s full of chemo and not feeling well, so it’s your job to make sure the doctors know how he really is, not how he wants to be or might remember he is. I’m sending prayers, love, and hugs your way.
The availability of treatment options allows you to choose the best treatment and fit for you. Whenever possible, I choose hometown doctors for treatment. Fortunately, we are only an hour away from great facilities in Tampa and three hours away from Mayo Clinic in Jacksonville.
Praying for good health and strength for you and Kramer, your family and the new grand babies.
I’m suprised you can even type all of this to tell us about it. It must be cathartic. Your family has really been through the mill this year. At least Kramer’s radiation is on the downside. Praying for you often.
Oh my – what a saga is right – how CAN you keep it all straight. The move to Gunderson sounds like a good one for you because of Dr. and logistics. It is too hard to be running 2 different directions. Prayers for decisions and especially for Kramer to feel better. You are so special – thanks for being you and informing your readers – I really appreciate knowing what is going on. Love to you all!
I would think of things you share with the doctor about Kramer not as betraying him, but helping the doctor get the full picture so they can do their best for Kramer. None of us can truly see everything about ourselves, even at our best. Also, the doctor’s office should never send you home without a written summary of the key points of the visit and any changes to medication or treatment. I go to a specialist and she apologizes that I need to wait a few minutes at the end of my appointment, then she or her PA come in with a printout of the computer notes from my visit and anything important or changed is highlighted and they review that. It never adds more than 10 minutes to my wait time, but I always feel confident I know what’s going on and what is my responsibility. I would ask about that and maybe even have them flag his file so everyone is reminded of it at each visit. You’re doing a great job managing all that’s going on, but it’s also ok to ask for help making it less stressful for you both.
I’m sending you lots of love, prayers, and strength!
So sorry for all that you and hubby have been going through. Prayers for you and family as always
Hugs
My heart goes out to all of you and many prayers.
I formerly worked in a hospital nutrition department and one of the things we would do to help those who needed calories and nutrition was to make a recipe called double milk. To 1 quart of whole milk add 1 cup of powdered milk, mix well and refrigerate. Use the double milk in any recipes that call for milk to up the nutrition and calories. For example, use double milk with a Carnation Breakfast Essentials packet; use double milk and a banana and blend for a shake; use the double milk to make a fruit smoothy, etc. It could also be used in cream soups, but your husband may not be able to tolerate hot/warm foods.
Sending you all love and prayers!
Love and prayers during this difficult and unknown time in your lives.
My sister tapes all her doctor’s appointments so she can listen to them again. It is too difficult to remember everything because you are reacting to what the doctor says and thinking about what you need to say. Communication is one of the most challenging aspects of the health care system. You do need a health care advocate. You are Kramer’s; the more the doctor knows about what is happening, the more he can help you both cope with the symptoms.
Patient/doctor rapport is important, so is being able to get to the appointments!
Good luck to you both.
Thinking about both of you and sending prayers.
Hi Jo: My husband had Hodgkin’s disease in our early 30’s. He underwent the radiation to his throat, similar to what your hubby is going through. I remember watching him try to eat with tears rolling down his face. By the time he finished the radiation his skin looked like it was charred and he had completely lost hair in the back of his neck, which hasn’t come back. However, it killed the cancer and it never came back. I realize that we were very lucky but I’m hear to tell you that what Kramer is going through is worth it. I’m also here to tell you that it’s horrible to watch. As I’ve said before, my heart’s with you. Melissa
I am a big believer in going with your gut…if you don’t “love” the Mayo doctor, you are right to change. You are in charge of your body and you are right to try to change doctors. I don’t know why you are both going through these health challenges (that isn’t a strong enough word) but I do believe that good can come of it. I have been in pain for about 10 1/2 years (two car accidents not my fault and two major surgeries). I have to believe that God can use my pain. Hoping that the end is in sight for both of you…glad that you have June 1st to look forward to. We all need to know that there is light at the end of the tunnel! Praying for strength for both of you and wisdom for the medical professionals. Sounds like you are in good hands at Gunderson. I always tell people that not all doctors graduated at the top of their class. Glad you are being proactive. Kramer actually needs you to advocate for him right now and that is very hard for someone taught to be stoic! Blessings to you both!
Any time a nurse or doctor starts talking about a treatment you weren’t expecting, you need to start asking all of the questions. When Leif was a baby and going through the kidney surgery, I had a nurse call me to schedule an MRI, which I’d already discussed with the neurologist and refused. She then went into a lecture about finding the cause for his seizures….which would have sounded reasonable except for the fact that my child had never ever had a single seizure. Information can get into the wrong set of notes.
Don’t doubt yourself for a minute. You are the smartest person inside your body.
Prayers continue with you all…for the unknown, for the treatment, for the symptoms it causes, for strength, for courage, for faith. God is with you. Do what you feel you have to do. Hold each other and don’t be afraid to cry. Love you for sharing all this so our prayers can help hold you up.
Baby food. When my hubby’s throat got to that point, he was able to swallow some of the first stage baby foods. For a few weeks, at least.
Hang in there Jo, it will get better. Changing back to the doctor you love, in the same town Kramer is needing to be, makes a lot of sense. You will both have less stress that way. Enjoy your beautiful grandchildren when you are able to. Prayers coming your way.
Don’t know how you can possibly keep all this straight in your head. My prayers to you and your family!
Keeping all of you in my prayers – the above baby food suggestion is a great idea.
Hooray for Jo!!!! Glad you are taking more control of your treatment!
Praying for all of your family. I love potatoes ! I had a tooth extraction today and can only eat soft foods. Mashed potatoes with butter and sour cream and anything else. Maybe your hubby can ear some.