Drinking From A Fire Hose- with my "entourage"
Updated: Feb 4
Isn't this such a funny expression? I have often heard this phrase throughout my life and I thought I knew the meaning behind it having lived this very feeling many times in the past 42 years. Usually it was when I was starting a new job or sitting in a college class that I hated like statistics (blah). It was not until my diagnosis of breast cancer and all the doctor appointments that would follow that first week post diagnosis that I really understood the meaning behind the phrase. After that dreaded phone call I told you all about a few posts back and telling my family the news, I immediately kicked into over drive and it did not slow down until all the surgeries (yes more than one) and the treatments were over a year later.
If you recall, I shared how the nurse navigator had my next appointment set up with a surgical oncologist in the hospital system I was just diagnosed in. Even though this surgeon was not of my choosing, she let me know that once you are diagnosed they "put you in the system" and your treatments would all fall into place- from mastectomy to chemo to radiation- all in once place- all in this same hospital system. The nurse navigator would even set up all of my other appointments as well to include MRIs, bone scans, PET scans, etc. I did not even know those would be needed so this was the first moment the water was turned on from the hydrant. Don't get me wrong, a nurse navigator is a god send at this point in your diagnosis and I have no clue what I would have done without her. After all, how many of us actually know how to go about choosing an oncologist and then setting up all the initial appointments and surgeries that would follow?
At this point, one day post diagnosis, all I cared about was wanting to know all I could about this mass inside my breast and how I go about getting it removed as quickly as possible. I was fine just "being in the system." I grew up in this city and at this very hospital system is where all of my doctors I have ever gone to have practiced- so it felt comfortable. My two babies were born via c section here so that made it even a bit sentimental. It seemed like the natural fit to stay in this system and with everything already on the move and set up by the nurse and it would be a hassle to change it. Not one physician, nurse or surgeon mentioned "do you want a second opinion?" I did not even think about looking for a second opinion or a second surgeon to interview at this point. So off I went to my first appointment where I met the doctor who I believe has the worst bed side manner for any patient let alone someone who was just told they have breast cancer.
On that first appointment I brought my mom, sister, dad, his wife, my dogs, a random cat...ok ok so I left the animals at home but I did bring everyone I could get my hands on to go to this appointment with me. There seemed to be strength in numbers and I needed that right now. In fact it was just the humans and my husband who facetimed on phone for the appointment 8,000 miles away. I had heard you want to bring people close to you for this appointment and be sure you have someone taking notes because this is stressful on everyone and you will forget a lot of what is said to you. That's the understatement of the year. I won't go into how the surgeon was visibly irritated I had people with me but I knew within 10 minutes I was not comfortable with him. He sat down to speak with me and told me I had invasive lobular carcinoma and looked to be early stages around 2cm or less. He said the prognosis was good and if I was going to have breast cancer this was a "good" one to have. He thought that a lumpectomy would be all I would need. I let him know right away I would be opting for a double mastectomy because I wanted the cancer gone and did not want to give it a chance to come back. He said we would wait until the MRI but he thought that may be awfully aggressive route. After all the million questions were asked and answered, my nurse navigator handed me a huge binder filled with all the information I could ever want (and most of which was more terrifying then not) and my following appointments to include the MRI that same week. It was so much information. There was no way I could take it all in. It truly was like drinking out of a fire hose. If you are at this point in diagnosis do not worry loves- you do not need to know it all or take it all in. Take a deep breath. Absorb what you can and the rest will fall into place...I promise.
After I left the appointment, my thoughts on the surgeon were shared by many in my "entourage" as he referred to my family as and I suppose would be quite fitting for the "Blonde Bombshell." HA! I just did not feel I was in the right place. I wanted to look elsewhere but I did not know where to even begin. And what was I going to do because my MRI was that same week? If something does not feel right do not stay just because you are "in their system." Trust me - as you will read in some future posts- the best thing I did was follow my gut and the path God was laying out for me. This is your life- your journey- take control of it! Sometimes God puts us on a path far greater than we can imagine. Do not be afraid to take those steps that do not seem comfortable. He won't lead you astray.
How do you turn down that fire house?
Remain calm- you have time. Trust me I know that it does not feel like time is on your side at this point. However, making decisions with a clear and calm head is always best so do your best to remain calm.
Take a deep breath and take in what is going on around you. Decide if you are comfortable with the surgeon that you have been put with. What he is saying and how he is saying it? Do not discount how he or she makes you feel.
Trust yourself! You know what feels the best and the best options for surgeons, treatments etc. Research other surgeons, treatment options and places and go with your gut on what feels right for you. It is your own journey.
Take anyone you want to your appointments. NEVER let a surgeon that has no idea how a cancer diagnosis feels make you feel bad for having a strong support system.
Ask for a second opinion and even a third if you need it! This may be with a surgeon that is close by or in the same hospital system. I saw 3 different surgeons (all different hospital systems) before I decided on the one.
*It is a huge red flag if the surgeon does not like you asking to have a second opinion!(spoiler alert- this will be discussed in a future post soon.)
Put the binder away- you do not need to absorb everything the first week and it does more harm then good.
DO NOT GOOGLE ANYTHING. This is probably the hardest thing for anyone with a cancer diagnosis. I can promise you this will only confuse you.
Start to think about which route you feel most comfortable with for treatments and surgeries. Perhaps a lumpectomy is all you "need." However, sometimes the more "aggressive" approach gives us the most peace of mind for the future. For example, I opted for a double mastectomy instead of a single for 2 reasons- peace of mind knowing that I took the tissue out of both breasts in case of reoccurrence and secondly for aesthetics purposes for the best reconstruction outcome.
Do NOT feel bad about wanting to look good after this is said and done. If reconstruction is a part of the journey for you then go all out and look for a good plastics guy then back into the good surgical oncologist. I will talk about how this made for the most amazing outcome with the 2 best surgeons in the US in a later post.
Keep your faith in God- no matter the outcome or your prognosis. He is ALWAYS with you and your faith is something you will need throughout this journey.
*This picture was taken at one of my exams. I had this overwhelming feeling much like the grace feeling I discussed in the last post to stay myself. I am a pretty silly and fun person usually and so it was important to me to not get bogged down in cancer. Trust me you do and there are enough of those days to come- so my advice is to stay as lighthearted as you can. Enjoy the good days. You got this!