Update on first treatment

I had my first treatment yesterday for stage III classic Hodgkin’s lymphoma. All good.

Here is what happened:

1. We showed up at the clinic at 9:00 AM. First thing was to take blood. The tech accessed my blood supply through the “port.” That hurt a lot because the tissue underneath the port is still sore from the little surgery that was required for the installation. When the tech injected the needle the pressure lighted up the bruise. Sorta like being stabbed in the chest. Then, blood flowed and everything was OK. Thankfully, as the bruise heals, accessing the port will be painless.

2. We then saw a Physician’s Assistant for “patient education.” Various drugs are administered through the port, and various drugs are taken orally. Nausea can be a problem so they also give you anti-nausea drugs. I will probably be bald for a while too. We received a three ring notebook with tips and information. The PA said she hopes my pain will reduce over time as the chemo begins to impact the cancer. I hope so, as I continue to have trouble sleeping. That said, when I got home, I slept very, very hard and that was a welcome relief.

3. I then went to the infusion room. The room is quite spacious and long. It is lined with reclining chairs and places for loved ones to sit. The patient sits in the reclining chair and the drugs administered by IV are hooked up to a pump and the pump is attached, in my case, to the port. (When my blood was taken, they attached the pump’s access tube, so the port did not have to be accessed twice thus avoiding the pain of the first effort.) You sit in the recliner until the infusion is done. I received two types of anti-nausea medications and one chemo drug. The process takes about an hour.

4. We then went to the pharmacist within the clinic and received most of my oral medications and instruction. You take certain drugs on certain days in each cycle, Each cycle is 28 days long, and there are six cycles. Some are taken by mouth and some are taken IV. The first 14 days of each cycle are treatment days. I receive IV infusions on the first and eighth day of each cycle. On days 1 through 14, I also take oral medications. The last 14 days of each cycle is “for rest” and you receive no drugs by IV or by mouth. Keeping track of the drugs taken orally is a bit of a task, but we received a helpful chart for each day showing exactly what drugs to take on what day. We also received instructions about how to avoid side affects. By the way, I have to order one of the drugs myself from a speciality pharmacy. Apparently, that drug is in short supply. They deliver the drug to your home via UPS or Fed Ex. So, that adds a bit of complexity to the regimen, but it is really no big deal.

5. I then went home. I began taking the pills in accordance with the instruction. So far, no problems. (Except, Joan says I glow in the dark.)

6. I go back next Tuesday for another infusion, This is likely to make me more sick than the first. Then, I will be off for 14 days until the new cycle starts.

7. It is a very helpful to have Joan attend my visits to the clinic. She takes copious notes, and asks the questions I should ask but forget to present. Additionally, because she has recently been through her own treatment for cancer at the same clinic, she has become very well informed. Between the two of us, I think we have everything in hand.

8. Unless I get too sick between now and Friday, I intend to drive to Omaha on Friday to do seven sentencings. I hope by the second cycle (about a month from now) that I will have a better read on my stamina and level of chemo induced sickness. If everything goes well, I will begin to resume a more normal schedule during the second cycle.

9.  The mornings’ e-mail shows that Grandson Milan sacrificed his pretty locks in solidarity with Grampa’s impending baldness.  See below.

 

Milan, in solidarity with Grampa. What a boy!

Milan, in solidarity with Grampa. What a boy!

 

RGK

22 responses

  1. Congrats on finishing day 1! I distinctly remember when Adam finished day 1. I remember looking across the Omaha skyline from the 7th floor of UNMC, feeling small, and thinking this one day was such a small victory on a long road.

    And yet, I was wrong. It was a huge victory because everything got easier. And harder. But, mostly easier. I hope you take some time to feel like you’ve really accomplished something.

    I’m glad you have such great support from Joan. Get some rest and keep on fighting!

  2. You Concord your first treatment with great Success! Wonderful! You have “love” & “support” All Around You! Your Family especially Joan & “Sweet Pea” Milan have shown their “Love”! Stay Strong & Keep us Informed!

  3. Best of luck, your honor. I keep you in my thoughts, and I hope that the treatments are successful!

  4. The family resemblance seems to run strong in the Kopfs. Do you have any childhood photos of yourself?

  5. TF,

    None that I am willing to share. But it true that Milan looks exactly like my younger brother when he was a child. All the best.

    RGK

  6. I will probably be bald for a while too.

    I worked for a Colonel in the USAF who was bald, mostly by choice (shaved the fringe he had). He reported that his wife was not dissatisfied. My son-in-law also is bald, for largely the same reason as my Colonel. His wife also is not dissatisfied.

    And you don’t even have to risk cutting yourself shaving your head. Count your blessings. [g]

    And continue your recovery. Alternative outcomes are overruled.

    Eric Hines

  7. Sorry Judge, I misspelled “Conquer”! I must be thinking about taking a vacation & how I can get to my destination, Concorde plane! LOL

  8. I left a longer comment on the “dirty old man” thread from which the below is excerpted:

    “To RGK, I don’t know the particulars of your illness, but I just lost my perfect wife to breast cancer late last year after eight years of fighting it and so I hope you have a better outcome and stand strong through the treatments. I trust you will. It’s no fun, but you’ll probably learn many things you never would have in law school or a courtroom; many of them rather more important, I’ll bet.
    You’ll probably meet a better class of people in the chemo room too. :)”

    I do know the particulars now and so by way of encouragement let me say I have a close friend with lymphoma, although of the non Hodgkins variety. He was diagnosed about the same time as my wife and has been cancer free for the last two years and no longer even has to do maintenance chemo.

    And if you’re anything like my wife you will come to regard your port as a friend who sticketh closer than a brother. Sticketh, get it? Seriously though, with the number of pokes they do it’s the only way to fly, especially if your veins are puny to begin with.

    Good luck on the education you will receive, whether you want it or not, and on your treatments.

  9. Dear Mildly Disturbed,

    Thanks so much. I loved it. I, too, am finding that the bathroom thing is a problem.

    All the best.

    RGK

  10. You’re lucky. When I was in with a pseudo-heart problem, they made me pee in a bottle from bedside–they wanted to monitor the…issue…from their drugs.

    Eric Hines

  11. Ditto on the well wishes. Remember to pace yourself. Milan does look like you. The eyes, I think.

  12. Dear Rich,

    Milan looks just like you–sweet and innocent! I’m not going to shave my head in solidarity, but I will share a few more thoughts in reflection on the last week.

    First, I love sunsets, landscapes, and beautiful people. I spend about two seconds looking at each, and I’m done. I’m just not a very “visual” person. Some people are entranced for longer periods of time, for a variety of reasons. That’s not their fault. But it’s worthwhile exploring WHY they’re entranced, and the impact that affixation may have on the justice system and society in general. Your commentary will stimulate that discussion.

    Second, I hate to shop. And I’m cheap. My 26-year-old daughter loves to shop, and she has wonderful taste and extensive knowledge about designer clothes. (She also has my credit card.). So, I gratefully accept her hand-me-down clothes. She’s about the same circumference as me; but she’s petite, and I’m tall. I’m sure, from time to time, I’ve appeared in a shirt that’s too tight or a skirt that’s too short. I hope lawyers, judges, and the general public forgive me, and understand that I just don’t care (AT ALL) about clothes. It’s a good idea to WEAR some, of course, because it gets cold in Nebraska (and we know that someone who sexually assaults us is unlikely to be convicted if we weren’t wearing any) but otherwise, who really cares??

    If you’ve had a challenging week, I’m happy for you, because that builds character!! And, in the end, that’s all that really counts.

    Laurie

  13. Dear Rich, Mike and I wish you the best on this treatment journey and praying for a complete recovery. Having a brilliant and very exacting wife, Joan, by your side, certainly makes the bad times better and the good times very good:) She says you’re a tough cookie and I believe it! Your little Milan is inspiration enough to beat this:) He’s adorable. I know you will. Take good care……Babs

  14. Good to hear your first day went well. I have been a Hodgkin’s Lymphoma survivor for 34 years. You can do it! Donna

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