Hi everyone. A LOT has happened since the 19th.
On the 22nd I had a breast MRI done to compare it to the original one done back in april. When I went into the oncologist for blood work (numbers were all recovered from chemo and looked great by the way) they were an hour late getting me in. So I had about 10 minutes to talk to her and then we had to leave to pick up Adam and do his IEP with his school team. In this short amount of time she tells me “we recommend mastectomy because tumor did not shrink as much as we would have liked it too. Of course I am devestated and begin to cry and of course they say “when was the last time you saw your counselor?” Ugh that pisses me off so much! Like these dr’s think we are never supposed to get mad or cry when they tell us these life changing things. Are you kidding me??? Of course I was upset. The surgeon had just told me a week before that we could do a lumpectomy and reconstruction! How am I supposed to feel? All warm and fuzzy?
So the next day I tell oncologist I want a 2nd opinion for surgery. I tell her Madison because American Cancer society recommended them as being a great cancer research center. I am set for Nov 1st in Madison at 8 a.m.
I see the surgeon up here on thursday that week on 25th. She again tells me that although she would recommend mastectomy she agrees with me that lumpectomy can be done and that a lot of tissue will have to be removed. I tell her I am getting a second opinion and she has no problem with that. I am really getting pissed off about all of the inconsistency with all of this. One dr says no it has to be this while another says no we can do this instead.
I am appalled by the inconsistencies across all of the cancer centers in this country. I am a member of some cancer facebook groups with women all over the world and there are doctors out there who say the following to their patients:
Don’t drink wine or alcohol
Drinking alcohol in moderation even during treatment is ok
Don’t take any supplements what so ever
Supplements are fine and we recommend them
Avoid all sugar
Don’t worry about your diet right now eat what you can
You need a mastectomy with tumor over 5cm
No a lumpectomy is fine for a tumor over 5 cm
And I could go on and on with all of the extreme opposite information being given by oncologists out there. And then they wonder why I don’t just openly trust them!
The next day I wake up with my right hand nearly numb and my right arm hurting and throbbing. I assume it is neuropathy and after 2 hours and it will not go away like it had before I call my dr. She sends me to the ER to have a CT scan of my head (yes there is a brain there) to make sure I am not having a stroke which blood clots are common with chemotherapy – another fun fact. No clots and it’s just neuropathy and they give me some help with arm pain and I hear yet again –
“sorry nothing we can do. This is just a side effect of chemo. Not sure how long it will last” I still have it all the time now. some times worse than others.
So I go to Madison and guess what?
I GET TOTALLY OPPOSITE RECOMMENDATIONS!
Oncology surgeon says she sees no reason why we cannot do a lumpectomy with my 5.9 cm tumor and the 1.1 cm tumor in the other side. They do it all the time. In fact, they follow all their patients and after 10 years and more there is no higher risk of recurrence than if they had a mastectomy. That is the same thing thedacare told me up here about recurrence.
However, she then tells me that where the tumors are will not be that noticeable when she removes them at all. Plastic surgeon can then go in and do a reduction. I said “I was told it would be a much smaller cup size” and she said “no not that much at all” I am shocked the difference in information I am getting. The nurse navigator came in and went through all the details with me and answered all my questions and they will be scheduling surgery within the next 2 weeks. (they need to do surgery withing 6 weeks after last chemo which was on Oct 8th.)
I tell her the issues I have had with shortness of breath and pounding heart beat and that resting heart rate is always between 90-105 and that my oncologist was not worried about it but she though I should do an EKG to check my heart as again chemo can cause heart damage.
I had an excruciating painful set of mammograms and then an ultrasound and radiology is having a problem getting a clear picture that they need so they can place wires through the breasts to mark where edges of tumors are for the surgeon on the day of surgery. I will have to get general anesthetic the day of surgery and do a sit down mammogram for them to place the wires – I pray it will not be painful. Then I go back to OR and they give me a nerve block that will last about 7-8 hours that will numb the entire chest area. Then they will knock me out for lumpectomy. And hopefully I will be able to wake up better after surgery but I am not counting on it. It is an out patient but I am hoping we can stay in hotel down there or they can keep me overnight vs driving all the way home after all that.
After pathology looks at area removed and hopefully says there is clear margins then I will go back in for reduction within in 2 weeks time. This surgeon too was confident that this type of surgery is very successful in removing all cancer area as well as removing just the lymph that the area drains to from the tumor area. He then assured me as well that cup size will not be all that much less than it is right now and has agreed to keep me overnight in case I do not react well to anesthesia. Luckily Jasmyne was there to help convince him that I needed this. I am so grateful her and my son in law took their day off to help me get through the day.
Finally after 4 pm we are finished and can leave.
The next day madison calls me to say EKG was abnormal and I need to go to ER for an immediate chest CT. This time looking for clots in lungs or heart. Thankfully they find none and blood tests come back normal. I need an electrocardiogram to compare it to the original one I had before chemo began and of course my insurance says I need to wait for preauthorization so now I wait. But they said they are scheduling surgery without the test so I don’t have to wait for that. I think I will glow in the dark soon from all the radioactive things I have been put through. Meanwhile I sit and wonder why EKG is abnormal and why dr up here did not look at this a month ago when I stated my symptoms had worsened. And again, they wonder why I don’t just blindly trust them.
I am hoping I do not have to cancel the next 2 classes I have coming up but it will all depend on the surgery dates. Hopefully I will have the dates by tomorrow.
The last 2 weeks I have been just a bundle of mood swings. Angry, sad, happy, disappointed, and repeat. Not sure to many people want to be around me right now. So sick of hospitals and clinics. So tired of this being the “norm” every day. So tired of hearing “sorry we can’t do anything for you, its just a side effect or we don’t have a lot of options for you financially” And then they wonder why I cry when I am there.
I begged the Lord for guidance and just to let me know if I was doing the right things, going the right way. What do I do? Can you hear me?
The next day I left my counseling appt and was very upset because I had not met with madison yet and I was sad over closing my office and our finances being tapped to next to nothing. I waited for the nurse navigator to get me to go over filling out a grant form that I wasn’t’ sure I had done right. I sat wiping tears and blowing my nose. Out of the corner of my eye I see someone push someone in a wheel chair and sit near by. I look away to try and hide my red puffy eyes and then this woman who was pushing the wheelchair is suddenly next to me and she says “I don’t know where you are spiritually but is it ok if I pray for you?” I just sobbed and was so grateful because I knew right then that God was telling me “I heard you. I love you” That woman hugged me and said “I just felt like I needed to come over here to you.”
Just when you think you are alone and wonder if God has heard you suddenly you are reminded. Thank you for praying for me and for my family. Every challenge is received differently by each person. We all react differently and for some a challenge may come easier than the same challenge comes for another. For one it may be devastating and for another it may be just a small bump in the road. So please don’t expect all of your friends or family who go through breast cancer to react the same way. Everyones journey is different even when faced with the same demons.
PS – thank you to my 3 children for taking me to see Bohemian Rhapsody yesterday. It was such a good movie and again reminds me that everyone has their own demons to try and overcome. Thank you for spending time with me and playing a board game with me. It was a much needed break from all the other garbage going on.