6 Months is here already!!

It's that time again!  Six months came up fast...  So!  I saw Dr. Yee and she would really prefer to wait on the scan.  It is out of concern for the amount of radiation I have been exposed to over the past few years.  Wow!  Someone is actually as concerned as I am.  What a "fresh" perspective?!?!?! 

She questioned and examined me and since I don't have any obvious symptoms of recurrance we are going to err on the side of "radiation" caution.  I am still having great difficulties with movement and pain but I have been told this is my new body.  All of my doctors have expressed their primary focus was to save me and deal with the consequences later.

MY consequences are lack of mobility on my left side and horrible swelling due to lymphadema.  It really, really sucks!  The swelling is terrible and seems to progress with each day.  I've usually got about 2 hours of bending and sitting/standing a day and then I'm done!  It is extremely painful.  So we are trying to come up with good plans to help tolerate my "new" body. 

I understand the philosophy shared by all of my doctors....that is to stop this from getting worse and deal with the side effects of treatment.  But man!  This is not at all what I'd imagine my recovery would be.  I falsely believed I would go back to the normal me and carry on with life.  I am, just in a much different way than I'd imagined. 

Repeat scan in December, God willing with the same results :-)

Stacey

More Good News!

I received my latest CT results last month and it was more good news. They came back clear and "free of any metastatic disease in the abdomen and pelvis." Yipee!! So I've officially graduated to 6 month scans. We couldn't be happier and more thrilled with the results and we pray for more of the same in early summer......I'll be in touch :-)

Three Months Are Up!

My three month check-up is coming around the corner. I am scheduled to see my oncologist again on December 16th. I am busy getting all of my bloodwork in order to have my CT scan done so on the 16th I will get my results.

I have been going to physical therapy. It has been tough. I have had my spirits crushed more than a few times. It is quite depressing that I have such limitations but it is helpful to finally understand why I have them. I love my therapist. She is young, funny, and most importantly knows her stuff! She doesn't have to go look up things in a book and come back with the results. She knows it right off the bat! When I get depressed or frustrated that I can't move my left leg in a very simple movement, she is encouraging, reminding me what I've been through. My work is not done.

I'll be in touch around the 16th! Say a prayer for good results. I will be devastated otherwise :-(

Stacey

What Better Gift?

I am happy to report that on Friday, August 12th (Hannah's 8th birthday) I received the best gift I could every dream of!! My CT scan came back clear and free of disease!! The doctor says there is nothing needing to be treated so I am free to live my life until December. Desmoids have an extremely high recurrance rate so I am realistic but loving being free....even if it just for now! Who knows, maybe I'll be one of the lucky ones!

I need to be closely monitored so my return visit is in December to check in on everything. I have to also say that as much as I didn't want to see this oncologist (my oncologists partner) I really think that I like her. She, too seems to love my husband and has a good beside manner but more importantly she doesn't dismiss me. She actually tries to answer my questions and not dodge them. Without me even mentioning a word about it she began to address my mobility issue. I was impressed that she didn't say, "ah you're cancer free, what more do you want?" She actually remembered that I am having new symptoms (numbness down my left side through my leg) and they bother me. She offered some stretches that she hoped would help and she read my face well that I wasn't sure I could do them. It's embarassing but I am almost completely immobile in my left hip and I often look quite ridiculous trying to do certain things. She asked me to sit on the floor so she could see that I truly understood what movements she was describing. When I couldn't figure out exactly how to get to the floor withouth looking like a complete idiot she blurted out...."you need physical therapy!" Ah! Ha! See I've been asking for this for years. A young person should be able to sit on the floor with her kids...I can't. Not comfortably anyway. So she demostrated the stretches and put in for an authorization for PT.

So we think we like this one much better. She still did ask which doc we would follow up with in December. I didn't like that but maybe she was just double checking that we still wanted to go with her. Not sure really but who cares. I told her the last I saw or spoke to him was May 3rd and he has not inquired about my health or whereabouts since then. She laughed and I said I'm sorry if that is awkward for you. She laughed again and said no, see you in December.

The thing on my foot, well it needs to be addressed but the onco thinks it's probably just a cyst on the tendon. I have a follow up with the primary to check on it's size. We need to figure out what to do about it because it's painful to wear shoes. When it gets too cold for sandals I will be in trouble. This...I can handle. Put a needle in that bad boy and drain it if you have to. In the past 3 1/2 years I've been through soooooo much worse than that!!

Thank you all for your love and support!

We made it to the end! Hopefully putting the final chapter in this very long story!

I'm hopeful...

Stacey

I Forgot to Mention

Oh, by the way....I forgot to mention that I have a new little growth on the top of my foot! It hurts to wear shoes that tie and lay across the top of my foot. We are watching it and hoping it's not a desmoid :(

Story of my life!

Needed Time to Digest

It's been a while since I last posted....I really just needed time to digest it all. I received a call from my primary doctor's office a few days after my last post and they informed me our request for a second opinion at the City of Hope was being denied but that they would grant me a second opinion from another oncologist. How generous of them! It is my right as a patient to obtain a second opinion. I am continually amazed at how they all act like they are doing me a favor. I am thankful we have insurance but for heaven's sake...it costs more than my mortgage!!

Anyway, it took another week before they would bless me with the name of the oncologist they were allowing me to visit. When they called with the name I was just in shock! They were allowing me to see, in all of their generousity, my oncologists partner! Wow! Thank you sooooo much!! That won't be uncomfortable at all!

So I sat on it for a week before making the call. I mean really what do I say?? I would like to see the new doctor but only when the other doc is out of the office so I don't feel like I need to explain to him that I think he is an idiot?!?!?!

My primary said the only way to get another doc was to appeal the decision with the insurance company and explain why this new doctor is not going to be ok. Really? Does conflict of interest mean anything??? I think two doctors in the same practice surely don't qualify as a new opinion, does it?!?!

I called the new doctor. I figure what do I have to lose. So we saw her 2 weeks ago. She agreed to see me on her lunch hour and in a different office than my oncologist I usually see. She really didn't have much to say until we have a new scan done. The last was done in January. It has been 6 months and I have new symptoms that do scare me and make me believe that I have an issue with it growing. BUT....only the scan can tell what is going on with my body.

Two days after I met with the new doc (it was a Friday) I left with Justin to Washington DC for an educational program. We went a little early and explored, he attended the seminar for 5 days and then we headed to New York for more exploration. It was great! Sorry, I get carried away...I'm just so proud of him!! I just got back yesterday and was not able to have my scan done today because they need to check my blood. This ensures that all of my organs are functioning properly and can withstand the contrasting agent they put in the IV at the time of the scan. Once I have the scan done I will need to wait until the new doc returns from vacation and we return from Florida.

She suggested we return to the old onco to receive the results but Scott and I assured her we could wait it out. I think that should speak volumes as to just how much I want to see this old onco....right? :-) She kept repeating that she would recommend returning to him for the results and we continued to re-buff her recommendation. We can be patient :-)

So that's where we are at...I will have a scan next week and wait until we get back for the results. We don't arrive back from Florida until August 9th so it will be a while before we have any answers. She will either say it is the same or it has spread. I pray it is gone but we have learned these things are far too unpredictable and they are different from person to person. Whatever the case is we will be ok. I'm just petrified to return to chemo! I will get throught it if I have to but man! I want to avoid that beast if at all possible!!!

Thanks for checking in....

I'll keep you posted. I may find that they say something to me at the scan that just scares me to death and I may very well go to the old onco for results. I mean really, what can he say to me that he hasn't already....maybe this will be my chance to give it right back to him!!

Still No Approval but a Phone Call

I received a phone call this morning from my medical group. The woman said that she needed some answers regarding my authorization and my doctor's office has not been returning her calls. Hmmm! Well that explains the break down, I suppose.

She needed to know who initiated the request for a second opinion...relevant, how?? And what type of oncologist I wanted to see surgical or medical. Hmmmm! Hmmmm! Doc's office said they already were asked to give a specific doc's name at City of Hope. Really any will do but my primary care doc obliged and gave them a name of an onco they are familiar with.

In her defense the woman on the other end of the phone was very nice and full of empathy for my situation. She said she hoped to be able to call me with a decision today and if not sometime this week. I didn't hear anything today so I expect it will be this week.

Thinking back on it I should have told them it was at the request of my doc, huh? Who am I to request a second opinion???!!! I know it is my "right" as a patient but we all know they don't give a rat's patootie about what I think! Darn! I should be quicker on my toes. Technically speaking my primary did initiate the referral but that is symantics really. Who cares who initiated the darn thing, it's needed! Ugh!!