Thank you for helping me to process all that has happened over the past week.
Over the weekend, my husband and I (and friends and folks posting here!) talked about a lot of options. Things like, if you trust a surgeon and something goes wrong, you feel like they did their best and you aren’t angry. We batted around lots of ideas and perspectives and emotions.
In between, I got a couple of significant phone calls. As I mentioned in the last post, my oncologist, who had been in Australia, called me, on a Friday night, from his car just after he landed from Logan Airport. He wanted to hear my perspective, then promised to work on this over the weekend.
On Saturday evening, my urologist called. He was the one who put in the first stent but couldn’t get the second one in. He spent a good amount of time helping me understand the path forward.
I certainly can’t complain about my medical care there. Wow.
In the end, I had more information to consider, but mostly, I felt much, much better.
Here is my summary of our conversation:
- Although the interventional radiologist is doing the next procedure, the urologist is managing this whole process. I didn’t realize that. I thought he had done his part and then handed me off to the next doctor. Of course I would assume that I am in charge! Now, I can think of the urologist as running the show and subcontracting this part to an interventional radiologist. It is a relief to know that I don’t have to stress over how to drive this program.
- The urologist plans for this to be a temporary tube. There is always a chance that they can’t do the stent, but that isn’t a decision for now. The plan is to do the stent, and he feels there is a very good chance that they can.
- The interventional radiologist is focused, not on the whole problem, just this next step. So he didn’t realize this is meant to be temporary and assumed it was permanent.
- Interventional radiologists don’t always have the best bedside manner. The urologist wholeheartedly supports me if I want to change doctors, but has worked with this guy in the OR and feels he is quite skilled. He also clearly said that if a family member needed this procedure, he would recommend this guy. So I decided to think about whether I can deal with the personality in exchange for the skill.
- The urologist is going to contact the interventional radiologist and make the program clear, that the next step is to do everything possible to place a stent, and make sure that he is on board.
That and your supportive comments helped me to get through the weekend. Thank you.
I apologize if this feels like I am taking you on a roller coaster ride. I don’t like that feeling myself. I was so, so scared, and you really helped me through that part.
Someone made a comment on my last blog post, and I will paraphrase it here. I used to walk around with an “unspoken innate trust that what is optimal will happen, or the sense that whatever happens will ultimately be workable.” I don’t always have that lately, but life at least is helping me to see that that is still true, so am hoping to regain that feeling.
So, the roadmap looks like this.
- I will get the nephrostomy.
- Roughly two weeks later, I will have the procedure to place the stent.
- If the stent can be placed, great. If not, then I can decide that maybe the bag isn’t as horrible to live with as I feared, or that I just can’t stand to live with that bag. If the latter, then we take it out and let the kidney go.
Although the schedule for the next five weeks looks crazy (every other week will have either chemo or a procedure requiring anesthesia), I can take a deep breath and get through it.
Thank you again.
But just to ask for more – I have chemo tomorrow (Tuesday). Please keep me and all of us in your prayers for an effective chemo session!
Love and blessings,
Marie
Adventures in Spiritual Living 
You and your family are daily in my prayers. Peace to you, Marie.
Dear Marie-
This is a journey that was unexpected and a hard road. I would have been very very upset just like you were. I don’t think I would have ever made it home and would have had to pull over the to the side of the road and cried non-stop. My heart goes out to you. An insensitive doctor is not what you need at all.
Thankfully, you are always in charge and people love you so they come to you aide right away—i.e. the doctor calling after landing at Logan or the urologist calling on Saturday. These folks are your angels. They will see you through and want to keep you living your life in as normal and uncomplicated way as possible and they will. But what is clear and true is that you are in charge and have such experience that you will always be able to see the path , even when it’s scary. I am not sure I would ever be able to be as strong as you .
You are always in my thoughts and even if I don’t respond right away, I am thinking .. what would work for Marie now.
Tomorrow is a chemo day. – where are you ? what floor? I am going to be there at 1 but would come a bit earlier to see you if that worked for you? I know you may nap and be knocked out and that is fine too.
Blessings all around xoxo
Steph
You have been through a great deal in the past few weeks. I read your blogs and have been a little worried about you. Glad to see you had a good chat with the urologist and he made everything clear. Good luck tomoz and i will be praying for you xx
Thank you Annie!
Hi Marie,
I had a difficult ob-gyn when I was pregnant. He was the only one who would take “elderly prima gravida”. A friend and I decided that “when you need a good mechanic, you need a good mechanic”.
We are with you, Love and blessings, Harriet
Marie, although I don’t comment on your blogs much, I read each and every one of them and am always lifting you up in prayer for your “highest good”. You have to know God has his eye on you and your procedures … every single one of them. Forget the short Dude with the earring and the ridiculous “Let’s Make a Deal” attitude … you won’t even know he’s there. Sending you much Love and Hugs!!!
Yow – what a rollercoaster! So glad you’ve discovered some clarity in the rapidly-changing landscape, and that it sounds like everyone’s on board for the plan. Whew. Yikes! Whew. Yikes! Sending calming vibes from the left coast for a smooth and effective Chemo Tuesday.
What a great doctor to call you from Logan after flying in from Australia! It sounds like you have a great new plan and I am so happy you are comfortable with it. One step at a time. May the love and support of all your friends and family continue to carry you and lift your spirits tomorrow and in the weeks ahead. xoxo
I’m with you. Sending love and prayers.
So sorry you are having to deal with this. Selfishly, it puts my “problems” this week in perspective. We are all rooting (and praying) for you Marie – you got this!!!!
Thanks Julia!
Sending lots of love and prayers!
Despite the chaos you experienced, remember, that God is with you! He’s the soft landinding in every storm we find ourselves in.
It’s hard to keep focus & find our prayers when we are feeling the pressure of those heart stoping moments. It’s very difficult to not feel despair when you’re doing everything you can to get past a crisis & you don’t see anything on the horizon. It’s hard to keep the faith. You’re not alone.
I pray that God’s presence gives you unshakable confidence, comfort, & peace as you navigate through the myriad of treatments & procedures. Prayers for healing, stabilization, & quality of life.