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!!

Nothing...stil!

My doctor called last Thursday to let me know they still have not heard anything regarding the City of Hope referral. I was told he was putting a call into the medical director who makes the ultimate decision. He agrees that this is taking entirely too long. Hopefully I will get an answer this week so I can get going!

I had the bump in my foot looked at...he said it looks like a growth but unsure if it is related. We are watching it... It hurts to wear shoes so I don't know how much longer I can continue "watching" it.

I also mentioned the numbness and tingling I experience every time I bend at the waist. He didn't have much insight except to say that I should hear about my authorization soon. I suppose he feels it's all related and should be tended to by an oncologist.

I'll be in touch!

Still Waiting

I called yesterday but they have not heard any news. She said with a major cancer center such as City of Hope, they do take quite a while to render a decision. I want this so bad...I'll keep you posted.

Still Waiting

I called my primary on Tuesday to check in on the status of my authorization. She told me the insurance company has asked twice for more details of my diagnosis and treatments. The first request came in for more info regarding how good of a lab rat I have been and the second request came in on Monday for a specific doctor's name. Apparently they just put City of Hope and they wanted a specific doctor's name written down. They supplied them with one and now we wait some more.

For those of you counting (and I'm one) it has been SIXTEEN days! I sure hope they decide soon. Call me crazy but I think that since they did not just say no, then there is hope. I may actually get this approved. Wouldn't that be nice??

Oh My Word!! Why Does This Always Happen To Me!?!?!!?

Thursday, May 5th was my return visit to my onco. He was to take the CD of my last scan (1/3/2011) to the hospital review board and have the radiologist take a look at my case. It was my hope that this new, extra set of eyes would be helpful in providing insight and perspective. He did not take the disc in for a second month in a row! So my time and money was wasted again!! I am not sure why it is acceptable for a doctor to do this to a patient, no less an oncologist! I am just as unsure why in the h@#$ I have been putting up with this from him and for so long!!!

I am told to return next month in hopes that the third time is a charm. I am fairly certain I won't be making it to this appointment! Since I was in such a bad mood leaving this appointment I decided it was time to make some noise with my primary care doctor. When it rains, it pours!

I had called on Wednesday to check the status of my authorization for City of Hope and oddly enough they could not find any evidence of it anywhere. It had been 8 days and the doctor stated that I should have it back before I had my onco appointment. The gal took all of my phone numbers and said she would call me back. Hmmm! She never called back. So after my visit with my onco on Thursday I was fit to be tied! Someone was going to hear me out...I was angry!

I placed the call as I sat in the parking lot of my oncologist wanting answers. I was told simply that the authorization had not yet come back. Since the doctor said that I would have it back in plenty of time BEFORE seeing my oncologist I was sure something was amiss. AND I was sure it was due to the person in charge of submitting the authorization did not do her job. After some badgering I was able to get her to fess up. She had not done what the doctor asked when he asked. It was only brought to her attention when I called inquiring about the results. Ah...well at least she owned her mistake but I can tell you I wasn't in a good mood. After I expressed my frustration at not having anyone take this as seriously as it needs to be and the fact that this beast could very well be growing out of control and I have not had chemo since November...... Luckily I was met with a kind, sympathetic, very apologetic human being on the other end of the phone. She realized her mistake (we all make them) and she assured me she would not stop until she got me into another oncologists office as quickly as she could make it happen. She also invited me to call her 10 times a day if that is what I needed to do. I appreciated how she handled the situation and I just may take her up on a daily phone call.

This is my weakness but I believe that she will not forget the sobbing, scared and very frustrated patient on the other end of the phone. I am completely emotionally drained from these damn tumors! I have nothing more to give them! They have taken so much from me and I so desperately want to be done with them. I hope this doctor can get me to something better...someone more knowledgable....and if he can't, the courage to acknowledge he needs help from someone else. To date, I have not received such care. :-(

Updates

Last Friday I went in for my follow up ultrasound to peek at that blasted ovary....Today I saw the doctor for the results. The growth has gone back down to a smaller size and he is no longer as concerned. Good news!! My next appointment is next year. So I'll cross this drama off my list! What a relief...

Later this afternoon I also had another appointment with my primary. This was my second attempt to meet with him. My first attempt ended when I left his waiting room after two hours of waiting. Who has that kind of time to sit and wait??? Not me, I had another doctors appointment that I had already pushed back while I was sitting in the waiting room. So! I got smart and made the first appointment once they returned from lunch. Note to self....I only had to wait one hour!

I have to say the reason I didn't walk away from this doctor forever is that I knew that he would take his time and care with me. He would do what ever I asked of him...and I was right. Today I told him how much I disliked my oncologist and put simply I don't trust him. He did say that we couldn't discount the fact that I have been stable all this time and that may be a direct result of his care. Point taken but once I said I didn't trust him my primary stopped defending him and asked me what I wanted. I told him that in an ideal world I would like to be treated by an oncologist who is very familiar with desmoids. I feel like a guinea pig and I'd like to feel like I wasn't someone's medical experiment.

He said that he would put in a request for a second opinion at City of Hope. While I don't really think that is the best place for me, it's a start and he feels most likely I will be referred to USC Cancer Center. Perfect! I know there are doctors there that have atleast heard of desmoid tumors and know a little something about how they behave. So today was a good day :-)

My primary did say that he didn't like that with all the blood work that I have had they weren't at all comprehensive and he ordered a full work-up along with a mamogram...after all I'm 40 now. Yea, yea, yea...so everyone keeps reminding me. I argued (half heartedly) that my gyno said I didn't have to until next year to which he replied, "with everyone else I'd say that is true but with you I would like to do it a year ahead. I need to keep a close eye on you, you don't have the best luck!" Finally, someone gets just how "special" I am!!

They expect the referral to come back before my follow up with my onco on May 5th. At that time I can chose to see what he has to say or give him the finger :-) The cooperation of Blue Shield will dictate the course I take. Please pray that the powers that be at good ole Blue Shield will finally see that they could have saved TONS of $$ if only they had sent me to a doc that actually has heard of desmoids and more importantly that the hell I've been through for the past 3 years has been torture only exacerbated by their unwillingness to allow me to see a slightly more expensive doctor in an effort to treat me more like a human and less like a lab rat.

I'll keep you posted :-)
Stacey

You all don't need to check in, you know what happened. He wasn't ready, blamed it on me and put me off until we decide if the ovary needs to come out. But that's ok because it gives me more time to figure out how to get outta there :-)

I'm hoping my primary can get me to a tertiary care center that specializes in this exact type of cancer. It's good to have goals...right?

I'll keep you posted. Next scheduled appointment is ultrasound to check in on my ovary. I'm prepared that it may have to come out and deal with the aftermath of awakening the "sleeping" white elephant in my back!!

Oncology Appointment Thursday

Thursday, March 17th I return to my oncologist. He could say start chemo next week or he could say let's wait until the ovary issue is put to rest. I suspect I will be starting chemo up next week.

I have another ultrasound to monitor the ovary issue next month.

Good News!

The results are in and they are normal! Has a nice ring to it...i'm not called normal very often. The plan is to continue to monitor my left ovary and watch the growth and see what happens. Bleeding has continued and heavy at that but we are just watching that, too.

I can't say for sure but I suspect this is just my body trying to get back to normal. That would be nice!

I had to cancel with my oncologist because the results of my biopsy were not in yet. It wouldn't have been a productive meeting had I gone since I had no answers. I will re-schedule and start back up with chemo. I've enjoyed the break but I can't avoid what needs to be done.

Oh! And I'll be trying to get away from the current oncologist I just don't know how much of a fight that is going to be....

No Word...

I didn't hear back from the doctor on Monday so it'll be at least until next Monday before I hear any news...

It Wasn't Terrible...

The biopsy wasn't really all that I had it conjured up to be. The biopsy of my desmoid was the most painful experience of my life! After having 5 kids with no pain meds and they all were 8, 9 or 10 pounders....that is saying a lot. Most painful experience! This biopsy was not at all like that!

I was bleeding quite a bit at the time and inspite of my embarassment from the entire situation, I am glad that the doctor could see just how much bleeding was going on. He didn't like it. He gave me some magic little pills to make the bleeding stop. I am happy to report that it did stop.

Strangely (or maybe not) the doctor ordered more blood tests, this round was to check hcg levels. I know why they ususally check these levels (check for preganancy) but since my "parts" aren't working properly....I can't even be pregnant. Maybe he thinks miscarriage?? Who knows! My body is one big mystery :)

Pathology reports may be back before Monday afternoon. If they are he will call me. If they are not, I will have to wait a week until he returns to the office. He will be back in a week from Monday. I'm not gonna worry about it.

Dr. Kassar said he would call me to check on me Friday. So far everything has slowed down...so we wait some more....

Here We Go!

The doctor would like to monitor my ovary for a few months before we decide to do anything. The blood work shows that it is producing small amounts of hormones but it is not "normal"...ha! I like to say it is "sick." It has served me well (look at those beautiful children) and I no longer need it. It can let go and die because it is causing me trouble!!

The ultrasound confirmed what the CT showed and that is an unusual thickening of the uterine lining. This coupled with heavy bleeding is not good. Tomorrow I go in for a biopsy of the uterine lining to rule out cancer of the uterus.

I don't know how long the results will take but I know my doctor will get them to me ASAP! He has called with all of the results the minute they come in. He even called after my visit last week to explain that the biopsy was to look for uterine cancer. He tried to be comforting but it scared me a bit.

It is what it is and all the worry in the world won't change a thing!
Thanks to all for your thoughts and prayers. I feel confident that this is going to turn out to be nothing and I can just keep on with my "normal" abnormal life :)

Ultrasound...check!

I had my ultrasound on Monday. Torture on the bladder ;-)

The results will be in on Wednesday morning. If demeanor is of any indication then the news probably not great but hey! Is it ever???!! The tech had sad puppy dog eyes after the exam and she put her arm around me as I left. Maybe she was just really friendly.

I can handle just about anything. I'm strong! Bring it on!!
I'll be in touch with the results...

More bad news? Is that even possible??

My gyno is concerned about my CT scans and the fact that I have had some pretty heavy bleeding in the past couple of weeks.

My last blood work to check my hormone levels was a year ago and they showed I was in early menopause. He actually said that helped decrease my risk of getting breast cancer. Yea, I think?!?! As if anything else could happen to me but I guess it always possible.

So! Blood work was done at the office (my poor little vein! This puppy has been abused for the past 13 months) to check on my hormone levels to see where we are at with that.... I have an ultrasound on Monday. I was right he didn't want anyone else doing it but him. Love that! Someone who will give me the best! Results aren't until Wednesday (next week.)

Since he is worried....my concern level has been heightened. I have in the back of my mind the worst it will be is surgery. Who wants to have surgery though? AND the biggest AND is surgery is typically not a good thing to have with this disease. Each recurrance has created a nice environment for growth and I have been fighting so hard to keep this at bay.

I'll keep you posted :(

Tomorrow

I am anxious but tomorrow is my visit with my doctor to investigate this new issue. I have ordered all of my reports and pictures from the most recent scans (September and January.)

I feel okay but just like it's the same ole "here we go again!"

Appointment On Monday

I am set to see my gynecologist on Monday to check out the ovary issue. My oncologist ordered an ultrasound to get a closer look and follow up with my doctor. I chose to see the gyno first and see what approach he suggests. I love that doctor. He has delivered all of my kids and was there for us during the miscarriages. He is someone that I really trust. It's a nice feeling to have faith in your doctor.

I'll keep you posted with what we find out.

It's A New Day!!

I visited the doctor on Thursday for my CT results.

The CT scans from January show "no evidence of disease!" It really doesn't make any sense to me and it is really just starting to sink in but they say I am tumor free! I argued but he insisted it's true. I just don't understand that after nearly 2 years of assault on my body now after 2 months of doing nothing...It's just disappeared!

I will however need to continue with chemo. It will be on the same schedule that I have been on. So weekly chemo and daily shots will be my routine for a few more months. He wouldn't commit to the exact amount of time but he said a few months until I get to the point that I feel like I'm gonna die. Thanks! That is such a crappy feeling, I can't wait to revisit it :(

There was another twist to my results. It appears that I have a sizable cyst (?) on my left ovary that is cause for concern. I've always been aware of a cyst on my ovary and liver but they've never been concerned about them. My last scan in September showed no such cyst on the ovary and suddenly the January shows one 5 times the size.

I've had my problems with these "parts" but always chalked it up to the assualt on my body....radiation and chemo. Last year the doctor tested and confirmed that I was in early menopause so I suppose this could be related. Who really knows?! It just really sucks to have something else to deal with! I feel like it just never ends....

But I'm tumor free :-)

Happy New Year!

So excited to see 2010 go! We hope and pray for a much better 2011!!

It's been a little over 2 months without chemo and I am slowly getting back to normal. It's a great feeling.

I had my follow up CT scan to see what has been going on for these past few months. It was a different tech this time around so he was asking about all of my history I filled him in on the latest and why it was that I was there. When he came back in the room to inject the iodine and after taking some initial images he asked me if the tumors started in my intestines. They did not and I now worry that he was asking because that is now where they are. There are many structures that are in "danger" and in close proximity.

My next visit is Thursday, January 13th. I'll let you know what we find out.