Dr. Lijun Dai chemo doc Uniontown



Dr. Lijun Dai

 

 

 

     So this is my latest doctor... she is number 8 on my team I believe...she is the doctor that will be handling my chemo here in Uniontown... love her, she is Great... loving , gentle,kind, wonderful...I am in good hands I can feel it...

When I was at her appointment we still didn't have the bone scan results back she tried to call them all day not realizing I had them done in Uniontown not Magee... The kids had to go with us to the appointment and we had no one as it was an early Am appt  and they had a snowday and My sis in law who normally watched them had to have a scope done that day. So we dropped her off for her scope and then headed to see Dr. Dai... pronounced as she said " have a nice day! ;) "

    This was the first time my kids have gone to anything to do with this cancer ...we have tried to keep things as normal as possible for them... But they handled it extremely well... Tori loved Dr. Dai as she came into the office and smiled broadly at her... She came in and listened and talked and said she was glad I was educated and informed... That scored 100,000 brownie points with me and Steve both...

     So, the chemo plan is the same as before only I will  24 rounds instead of 16...  she expects me to tolerate it reasonably well ... she could not tell me for sure what my prognosis was without the bone scan...if it were to show a malignancy it would be a complete came changer... Because as it stands I am a Stage 3A...at this moment considered cancer free and the chemo and radiation are to try and kill anything that may have escaped to anywhere else systemically and locally...as recurrence usually happens most often at the incision site...so radiation targets that chemo the rest.

     She kept leaving the room to try and call and get those results as they were so important... My poor sweet Tori sat there with her little fingers crossed the whole visit. Broke my heart...We have talked at length with the girls and each other to find out the best way to deal with them as far as what they should be told... i have even talked to a child psychologist... we were told be honest , upbeat and make no fake promises... let them ask what they want and don;'t offer info they don't ask for but let them know they can ask anything and be a part of anything they want to... It made a huge difference to Tori that we  leaving the door open when my drains were being done and she could hold my hand...she was afraid of what was happening to me behind closed doors... My kids are extremely intelligent and compassionate...I have never lied to them or hid a thing from them... they both have said they want to know the good ,bad, and ugly... they want no secrets or lost opportunities... So that is how it works for us... I have never sugar coated things for them ...if they were to have an Iv or a shot they were told it would hurt a little...then be over but was necessary...i am so glad that was handled that way as they trust me. And right now with everything being upside down in their little world they need to know that I'm not dishing out bull to them.

     I did ask her what she thought my prognosis was going to be and my recurrence rate... She said my recurrence risk is VERY high from the tumor sizes...many number of tumors , multiple types of cancer and from the 5 malignant nodes... she said chemo and radiation would reduce that risk but it is still around 35%... As far as prognosis though...she told me if the bone scan came back clean then she and I would be a team for a LONG time... that she thought I could survive till maybe 60 years old... she could not say I wouldn't recur and of course how , where and when makes a huge difference ... but we will have to face it and fight it as it comes...but at this point I will take it...that's the only time I teared up... if only I can live to see these kids out and successfully on their own and spend more years with the love of my life that is so much more than I had dared to dream.

    Chemo on the other hand...uggg... the nurse went over everything in detail with me as far as what to expect and side effects...scary crap... I got a binder as big as the one I had pictured before just for the chemo... you would never believe the papers I had to sign... possible heart failure...kidney damage, nerve damage , inability to button anything or walk...oy...each chemo drug had its own set of terror report and I had to sign and initial each one...The one that really got me was the one that states these drugs may be of no benefit to you ...and the one that says you are free to end or forgo treatment at any time... then the dreaded Five wished thing was in there which is essentially your will and advanced directive but alot more detailed than the ones I already filled out... I did not let the kids hear all of that.

     So we were then free to go with a HUGE stack of books papers and Binder...so now i have a new book of life though the surgery book i looked at that way...this one makes me think of poison and skulls and crossbones and mister yuck stickers... I was told any body fluid would be toxic for 7 days after all treatments so toilet must be double flushed if i get sick Steve has to wear gloves to clean up anything and then immediatly dispose of them...

    My daily restrictions will depend on my red, and white blood and platelet counts... they determine who what where and when I am allowed to be around... I read in there that I cannot eat food that has been in the fridge for more than two days...no fast food ;( so i am eating a cheeseburger tonight lol... no fresh fruit in certain circumstances...no pets...amazing amount of info.

    So later that day I had to call the doctors office and leave a message because she had scheduled my chemo to start on March 20th.  in the meantime I called my My Gyne and told then the Onco wanted this polyp and D&c done NOW...so amazingly they magically had an opening the Gyne called me himself and fit it me in and scheduled my Hysterotomy Polyp removal and D&C for March 18th... And what he had said would be a twilight small procedure is now a general surgery so that he can deal with whatever he needs to while I am out... So chemo will be moved back about a week... I got the nurses answering service and they called me right back... while they were on one line my cell phone rang and it was Dr. have a nice day herself...wondering why in the world my bone scans weren't back yet then we realized she thought they were at Magee... So, she said ill call you right back...longest 5 minutes of my life but the results were...

 So, unless it is on a cellular level and undetectable...

 

No Bone metastasis...if I had been a Stage 4 ( the last stage) then radiation would have been cancelled and I would have been on a keep me alive stage not a keep the cancer gone stage... So now we will watch so closely...and test constantly, scans at least every three months and anything at all that feels wrong gets checked immediately... So every three months ill have this anxiety but I will take it!!!

 

So then we had cake , I had two helpings and ice cream followed by and cheeseburger chaser and I have had cake everyday since! This is not the actual cake but it sure is a cute one...

     The next day was my Magee appt... First up was the trans vaginal ultrasound... the debris filled cyst was still present , the endometrial lining was back to normal not thickened, but the polyp was still there and unchanged...

 

     Next to the surgeon who took off my breasts...day 17 and my drain was STILL not ready to be taken out...I had myself worked up all day for nothing cause I was so anxious about the painful removal, though she was able to repair an opening in my incision with surgical glue and steri strips and remove the loop of sutures that has come through the opening.

    We had an hour and a half wait till we met with the radiation oncologist so we sat in the lobby and waited ... I looked over and saw real irony in this:

 

The door on the left is Magee Birthing Center where I gave life to Savannah 13 years ago.... the door on the right is Magees Women's cancer center, where Dr. McGuire's office is who removed the cancer to save my life... How my life has changed over those 13 years is unbelievable

 

Next was the meeting with the Radiation Oncologist

this is what the machine I will get the radiation in looks like:

Radiation will occur 4 weeks after chemo ends... I wasn't crazy about the radiation doc ...she was distant and weird...But since i will be having it in Uniontown as well she was just an info source... So, I will have 6.5 weeks radiation at 5 days per week... She basically told us that they will burn my skin till it blisters on the whole right breast and underarm as the area where the incision was is the most likely place for recurrence... she said I will feel nothing while it is happening but it will act like a bad sunburn and they have creams to help with that...Side effects 5% chance of getting a carcinoma cancer in the future form the radiation itself... But is makes my recurrence rate go down and the survival rate go up enough that it makes the risk worth doing... I am grateful for the radiation as it means we are still at the keep the cancer gone stage...not just manage it...

Was a long day and I was exhausted when I got home I took a two hour nap then went to bed...but woke up early 4 am this morning overwhelmed by upcoming events. Drain still needing out, port placement, Hysterotomy...and impending chemo... But I used the time well as I turned my problems over to God and then prayed for many people that are dear to me that were having surgical procedures and other difficult times today.

Today was my meeting with the local general surgeon to discuss port placement...Dad drove me while Mom picked up my girls... Doc was running behind almost an hour... So If the drainage tube comes out on Monday then I will have another surgery on Tuesday to have a power port placed...this will be done under twilight at Uniontown hospital by Dr. Ball... it is larger than a normal port and thicker but the reason he is using it is the advanced stage of cancer and the fact that I need so many venous punctures not just for chemo but for the headaches and dystonia, as well as this type of port is the only port that allows Ct contrast and dyes to be run through it... so though it will be more visible and less comfortable in the long run he said it is better for me...

this is what the power pump looks like

But mine will be higher right under the clavicle...

Dad was really wuiet in the way home and when we finally got home he didnt look right and said he didnt feel well...which he NEVER does... so we took his blood pressure it was 220/102... scared me to death so Mom drove him straight to the hospital...they ran a battery of tests but found it to be a cluster or migraine headache that raised it like that... at this rate I will be either entirely grey or bald even before chemo...
Speaking of  bald...I found my chemo personna today...

Just as Beyonce gets her alter ego on before she goes on stage i think I'm gonna turn me into a Gangster Moll and let her take the treatments for me... I adore this style... gonna find me some cure mary jane flapper shoes and some cloche hats... and head to chemo in style!

 

 

And on the days I feel like crap this should entertain the nurses...lol

So I get a break for two days then back to surgeon to see if drain can come out on Monday, Surgery for port on Tuesday if drain does come out...then Childrens for Tori on Wednesday... Then I should get another break till echocardiogram and then Gyne surgery on 18th...

We  are really hoping that I feel well enough that the four of us can sneak away for a day at the Carnegie Science center , then a hotel to swim and a nice dinner as soon as we are back the gyne surgery will happen ...then chemo will start... trying to grab one more little peice of normal...

I will smile , I will have joy, it will not be stolen... I love my perfectly imperfect life and will hold on to it with every ounce of strength I have... I love you all thanks for joining me on my journey...your friendship and prayers are priceless to me... hugs!xoxo