The "Outlier" persists....

oldbeauty

TeddyandBears_Mom said:

Thank you for sharing your

Thank you for sharing your update Oldbeauty. It is great to know that you have made a decision and it sounds like the best one for you. I hope the size of the tumor is big enough so that you can keep going on the plan. Take care and please let us know what you find out.  12/14 will be here before we know it!

Love and Hugs,

Cindi

Thank you, Cindi

I appreciate your kind words.  Yes, I am nervous and there are moments when I start to second guess myself.  But I am going to move ahead with this.  Thanks for your support.  Best wishes, oldbeauty

oldbeauty

cmb said:

Treatment decision

We all make treatment decisions based on what we know and feel. I can certainly understand wanting to have the tumor removed now when it's still small rather than waiting and possibly spreading. I believe your decision is a well-considered one, supported by what you've learned from your doctors and other knowledgeable friends.

While no procedure is risk free, especially in these times, I do think hospitals are doing their best to minimize the spread of Covid within their facilities, especially since infectious control supplies are more available than they were last spring. I've had several tests in the past couple of weeks (CT-scan, MRI head, etc.). All the medical personnel were very careful. And they've slowed the intake schedule so that there aren't as many people in the waiting areas and facilities can be wiped down after each patient. I'm sure theyll be even more careful with surgical procedures.

I'll be sending positive vibes your way on 12/14.

Thank you, CMB

Decision making is a lonely exercise, isn't it?  I trust, value, respect and consider the advices of all my medical providers.  Yesterday, I settled on the fact that this is MY disease (the statistic of one!) and this is MY body, and if I feel that I am at an important juncture, then I feel I should honor that and take an action that may seem drastic to some but feels right to me.  If this turns out to be "nothing" or even inconclusive, I will be chagrined perhaps but I will have obtained valuable knowledge and I will be alive and I will feel empowered. 

I hope everyone's TG was satisfying.  Hubby and I cooked one of our all time best meals and shared our bounty with others who were home alone, which we hope they enjoyed as much as we did.  We made some phone calls,  had a pleasant hike and watched a terrible movie.  A good day!  Best wishes to all, Oldbeauty

SF73

Oldbeauty that sounds like a

Oldbeauty that sounds like a lovely day. We had a very similar thanksgiving. Thank you for sharing your decision making process with us. So much to learn from a 15 year survivor. Much love!

Molly110

oldbeauty said:

Thank you, CMB

Decision making is a lonely exercise, isn't it?  I trust, value, respect and consider the advices of all my medical providers.  Yesterday, I settled on the fact that this is MY disease (the statistic of one!) and this is MY body, and if I feel that I am at an important juncture, then I feel I should honor that and take an action that may seem drastic to some but feels right to me.  If this turns out to be "nothing" or even inconclusive, I will be chagrined perhaps but I will have obtained valuable knowledge and I will be alive and I will feel empowered. 

I hope everyone's TG was satisfying.  Hubby and I cooked one of our all time best meals and shared our bounty with others who were home alone, which we hope they enjoyed as much as we did.  We made some phone calls,  had a pleasant hike and watched a terrible movie.  A good day!  Best wishes to all, Oldbeauty

Old Beauty,

Old Beauty,

 

I'm having my port removed in a couple of weeks, and none of my considerable anxiety about the procedure has to do with COVID-19, since I figure that most hospitals are safer palces to be than a grocery store. My gyn/onc was telling me just this week that it seems from the data that the risk of hospital-transmitted COVID-19 is low. He also said that he is seeing new patients come in with their cancer more advanced from COVID-related delay in seeking care. I think you are wise to do what you think is best for your health and well-being, despite the pandemic.

 

Best wishes,

Molly

oldbeauty

Molly110 said:

Old Beauty,

Old Beauty,

 

I'm having my port removed in a couple of weeks, and none of my considerable anxiety about the procedure has to do with COVID-19, since I figure that most hospitals are safer palces to be than a grocery store. My gyn/onc was telling me just this week that it seems from the data that the risk of hospital-transmitted COVID-19 is low. He also said that he is seeing new patients come in with their cancer more advanced from COVID-related delay in seeking care. I think you are wise to do what you think is best for your health and well-being, despite the pandemic.

 

Best wishes,

Molly

Good to know.

Thank you, Molly.  I hope your port removal is a breeze.  Best wishes, Oldbeauty.

TeddyandBears_Mom

Molly110 said:

Old Beauty,

Old Beauty,

 

I'm having my port removed in a couple of weeks, and none of my considerable anxiety about the procedure has to do with COVID-19, since I figure that most hospitals are safer palces to be than a grocery store. My gyn/onc was telling me just this week that it seems from the data that the risk of hospital-transmitted COVID-19 is low. He also said that he is seeing new patients come in with their cancer more advanced from COVID-related delay in seeking care. I think you are wise to do what you think is best for your health and well-being, despite the pandemic.

 

Best wishes,

Molly

Molly, I put some lidocaine

Molly, I put some lidocaine on the area with some plastic wrap over it prior to going in. That helped so much that I barely felt the needle they used to numb the area. Once that was done I felt nothing during the removal procdedure. This was the easiest thing I went through from start to finish of my cancer journey. I had no pain afterwards either. Hope this helps.

Love and Hugs,

Cindi

Molly110

TeddyandBears_Mom said:

Molly, I put some lidocaine

Molly, I put some lidocaine on the area with some plastic wrap over it prior to going in. That helped so much that I barely felt the needle they used to numb the area. Once that was done I felt nothing during the removal procdedure. This was the easiest thing I went through from start to finish of my cancer journey. I had no pain afterwards either. Hope this helps.

Love and Hugs,

Cindi

Thank you for your kind

Thank you for your kind support, Cindi. I'm not worried about the pain. I hate the thought of being fully alert while someone cuts into my chest and fishes around for a tube that runs into a major artery right at my heart. I think it's barbaric that the hospital where I get care doesn't offer conscious sedation, which most of the institutions it would compare itself to do offer it to patients who want it. Just because it's a procedure they do every day that doesn't mean it's an everyday experience for the person being cut into. I am so frustrated and angry about my limited choice, which is to leave it in or to submit to the procedure there. I'd go to UW Madison, which is only a couple hours away, but it's out of state for me, and my insurance wouldn't cover it. 

The interventional radiology department has no relationship with the cancer center in terms of policy, so my wonderful gyn/onc can't order them to use sedation. I've been so privilileged -- and lucky, too -- to have been able to get my treatment at one of the top 10 academic cancer centers in the country only minutes away from my house and my work. I couldn't have gotten better care if I'd been the Queen of England, with the exception of having the port put in, which was one of the worst experiences of my life. Now I have to let the same people do it again, only this time at least it won't be an hour to endure. Chemo and radiation were frightening experiences the first time, but the difference was my doctor, nurse practitioner, chemo nurse, and others all had my back. They prepared me in advance, listened to my concerns, and held my hand, literally and figuratively. Interventional radiology was a different matter. I told them when I made the appointment and when I arrived over 2 hours in advance that the usual drugs used for conscious sedation didn't sedate me. Four different nurses came into the prep room while I waited, and I told each of them the same thing. The nurses tried to find the doctor so they could give me something in advance, but he only arrived 5 minutes before the procedure and told me it would be fine.

It wasn't fine. Whatever the gave me had no effect at all. I was wide awake and hyper alert for the entire 65 minutes in the procedure room. Because they expected the drugs to sedate me, they didn't tell me anything about the procedure itself, including that an xray machine would come out of nowhere and whir toward my head. I cried the whole time, tears leaking out of the side of my eyes while I stared at the digital clock in the room and watched the minutes crawl by. Then nurse kept patting my hand and telling me it was all right. I wanted to scream at her "NO, it is NOT all right. I told you this would happen and you didn't believe me." But I did nothing of the sort. The doctor midway through offered to give me something else, but I told him no as I'd then have to wait around before I could leave and I wanted to get away as soon as possible. Had I known that we were only half way through I would have taken it. But they'd told me the procedure was going to be 20 minutes.

As you can tell, I still have a lot of anger and frustration about that experience, and I hate having to put myself back in the hands of that department. After having a D&C and a hysterectomy -- both of which were a breeze -- I hadn't wanted to have another procedure, so I'd initially opted out of getting a port. My veins are small, so I gave up after two or three chemo cycles and got the port. Being wide awake on the table in that horrible room, powerless and afraid, was everything that I feared most about cancer treatment. Had I had the port put in before my first chemo I likely would have changed my mind about doing the chemo and radiation. As it was, I knew that experience was the outlier. My heart goes out to the women who post who have had much worse experiences from their own care team. I admire their bravery, grit, and persistence.

Thanks again,

Molly

TeddyandBears_Mom

Wow Molly. So sorry you went

Wow Molly. So sorry you went through that. Have you asked your Gyn/Onc-surgeon if they could remove it for you? Mine offered to do it but I had the same doctor that put it in remove because he was local and I was comfortable with him.  If that isn't possible, I would ask for some anxiety meds to take ahead of time. You should not have to go in there so upset.

Please update us as you go forward. I'll be thinking of you.

Love and Hugs,

Cindi

Molly110

TeddyandBears_Mom said:

Wow Molly. So sorry you went

Wow Molly. So sorry you went through that. Have you asked your Gyn/Onc-surgeon if they could remove it for you? Mine offered to do it but I had the same doctor that put it in remove because he was local and I was comfortable with him.  If that isn't possible, I would ask for some anxiety meds to take ahead of time. You should not have to go in there so upset.

Please update us as you go forward. I'll be thinking of you.

Love and Hugs,

Cindi

Thanks, Cindi. I really wish

Thanks, Cindi. I really wish my gyn/onc could do it, but in the hospital I use, it's only done by interventional radiology. My wonderful doctor did suggest that I take something first and offered to prescribe it, but I have a bunch left over from when I started chemo. I was reluctant to take an anxiety medication last year because I know the benzodiazapines are all pretty addictive, but I let a social work friend convince me, and it was a big help during the 3 weeks between my surgery and first chemo. After the first chemo was over and I was no longer afraid, I stopped taking the anxiety med, so I have plenty to take before the procedure. I'm sure it will help take the edge off, but it isn't the same as conscious sedation. I made an appointmennt last week for next Friday and it showed up the next day in My Chart, as all appointments do in that system. Then on Friday someone from interventional radiology called and asked me if she could move my appointment 2 hours later. I said that was okay, and then I noticed the next day that my appointment has entirely disappeared from My Chart. The port removal is not getting off to a good start.

I was telling my acupuncturist today that writing about the port insertion last night made me realize how angry I still am about it, which is unlike me. She said something very helpful -- that it will be out soon, and once I'm through that, I can let go of the anger and frustration. I think she's right -- what's been on my mind in the year since I had it put in has been that I will need to deal with those people again to get it out. 

I know I've been fortunate that the port insertion was the worst aspect of the last year of chemo, radiation, and recovery. Soon, the port will be in the past, and I can be grateful for how much easier the port made infusions and forgot about the interventional radiology department.

Thanks again,

Molly