Life In The Real World

[PrincessFiona]

It's official...the word coming out of my oncologist's office yesterday afternoon was most definitely remission.

R-E-M-I-S-S-I-O-N

I haven't been able to wrap my brain around it yet.



I went into my PET scan on Wednesday expecting the worst and hoping for the best. I got a good night's sleep and just decided that I couldn't change the results and so I needed to be prepared for whatever would happen.

The results initially that we were told by the radiologist were "remission" but a later look at all of the lab results was a little confusing. There were hot spots still on the tumor, bone marrow and my neck and my white count was down (3.4) as were my lymphocytes. So though we trusted that the radiologist was probably right, we couldn't help but worry that *maybe* there was still something.

I have continued to have difficulty getting a full breath and have chest pain at times and it is eerily similar to the initial symptoms that brought me in.

A trip to our oncologist yesterday afternoon confirmed that the bone marrow activity was likely radiation rebound, that the white cells weren't a terrible concern (likely early morning blood draw effects...go figure) and that the regions that did light up were <2SUV and were not of concern.

The chest pain/shortness of breat/difficulty drawing in a full breath could be radiation pneumonitis or could be permanent effects of the large size of the tumor and remaining scar tissue.

I have access to a great before treatment MRI picture side-by-side with my after PET and when I finally have it on my computer, I'll upload it here.

You have all been such a wonderful source of support for me throughout all of this. I don't think I could have gotten through it in one piece without your willingness to listen and comfort me....I love you all so much.

Thank you for being there for me!

Kris

[PrincessFiona]

I've officially been lazy all week. Andrew, Amanda and Alex have been at camp and instead of tackling my huge to-do list, I've slept in with Aidan and Zoe and ...painted the bathroom (a late, impulsive addition to my to-do list :>) I can't seem to motivate myself to do the cleaning and organizing that I had planned on, but I think the relaxation and extra sleep has also done me some good.

Of course, their trip away has not been without it's own little breed of drama. At first, Alex wanted to come home because he was afraid of monsters and zombies hiding underneat his bed...this problem was quickly solved because apparently all 4 boys in the room decided that the mattresses were much more comfortable when placed on the floor altogether in the middle of the room So now my two boys are huddled up with two other brothers....crack me up! I haven't even been able to get Alex to stay on the phone with me for more than a few second since he got over his zombie scare.

Amanda's roomates are all 13 year old girls...This of course resulted in her deciding that SHE was 13. Apparently, it evolved into her swearing being mean and generally acting like a brat. Andrew called me almost hourly at one point to update me Somehow even with them at camp I still had to listen to them fight!!!! Things finally turned around for Amanda after the 13 year old girls turned on her. She called me begging me to step in and get her a different room, etc. and I just pretty much told her that she made her bed and now she has to lie in it. It wasn't even hard for me to do because I was so angry about her bad behavior. Apparently though, my breed of tough love worked because....her behavior flipped around 180 degrees...now she is being nice. (At least that is according to Andrew's daily updates )

Then came Andrew. Wednesday night he called me at 11pm crying so hard that I couldnt' understand him. He begged me to pick him, told me that he was terribly depressed, that the kids were making fun of him that he was miserable and if I didn't pick him up, he was running away. I tried to talk to him for a half an hour, but I could barely understand him through the sobs and his attempts to get control. I honestly thought I would have to go and pick him up.....and then it started spilling out of him...the chemo, the cancer, thinking the baby wouldn't make it....the stress of the neighbors....

A camp counselor was hovering nearby and I was able to get him to give the phone to her. She sat down and talked with him for an hour and listened while he talked about this horrible year...and now...he's happy again.

I've decided to get counseling for the kids though and am in the process of looking for someone good. I can see now that our experience has had a huge affect on them and maybe I'm not the best person to try and *help*. I can listen, hug and cry with them...but maybe they need someone more skilled to walk them through this journey?

Our neighbor situation has been an ebb and flow kind of a thing...We ended up having to contact the police after they swore at our children and babysitter in our absence (and then pulled out their digital camera and were taking pictures of them, etc). The behavior was totally threatening and out of control...then the neighbors lied and said that I had made it all up because I wanted to hurt them personally. The police went to our sitter and after her report came back to our neighbors to pretty much tell them "the gig is up". The result? They hid in their house for several days...

I found out that they have basically gone houseto-house with different rumors....but the response was not what they had hoped for. People have turned their backs on them and we have ended up finding a great deal of support. Our neighbors have had so many issues in the past with 'crazy neighbor' that they are mostly rallying behind us....I have had several neighbors approach me and express their outrage and that has helped me immensely! Also, my crazy neighbor won't be sending her kids to school next year in this town...due in part to some run-ins that she had with the school counselor in regards to her children....so...that is all good news for us too.

I feel sorry for her in a way (slap me...I know I'm a weenie!). I really think she is manic-depressive or something in a realllllly bad way. After some talks with a friend (thanks Nellie!) I realize that if she was being medicated she probably stopped during her last pregancy. Since delivering her baby this outrageousness has started...and she's trying to get pregnant again (God help that little baby!!!) so I bet she's not on anything now either. It *almost* makes me feel sympathy...but she has been so awful to us that I'll never be able to forgive her.

That's my update for awhile. I pick the kids up tonight for the pigroast/farewell and then I'll be offline again much more.

Finally, I wanted to add a picture of the remission gift that I bought for myself. Here is the little baby garden angel that I put in my front garden. It is in honor of the little boy who passed away this year while Zoe was in the NICU. It is made of stone and the shading/color differences are due to the variations in the stone itself.



Kris

[PrincessFiona]

Doctors can be such tools. :> I think I have had enough medical *help* from them now to make that statement!

This has been my crazy week! I continued having issues with shortness of breath that got worse (the rad onc said it could, right?!) Then I began having pleural pain and was sweating everytime I walked anywhere. When I was struggling to walk from Target around the corner to B. Dalton in the mall, I knew there was something wrong.

So...I went ahead and put in a call to the rad onc and he decided to have me come in for a visit. There, he promptly let me know that he "sees this kind of thing all of the time after treatment"...you know...people and their anxiety. I am not disregarding anxiety as an actual thing that happens after treatement...I do have some...but...this was more and I felt it quite strongly. He actually told me that he had "laid in bed" the night before trying to think about what could be wrong with me and that there was just "no medical explanation".....tool!

After a nice little condescending conversation he decided to do a CT to "rule out the medical" and told me ithe CT would come back clear and that I would see that after more of these clear CTs my symptoms would go away.

Oh, Thank you, medical Gawd.

Of course it wasnt clear...I had ground glass-like lesions throughout my right lung and one lesion that my regular oncologist (whom I like) called "peculiar"....and...off and running we were all over again. Thomas got so sick to his stomach and upset that he couldnt work and had to come home several hours early. The radiologist of course couldnt rule out relapse and so Thomas and I were fairly hysterical.

Then the rad onc called to tell us that he had seen the same lesions on my planning CT so there was nothing to worry about....and we calmed down...then the next day, the radiologist combed through the planning CT and announced that they were not there at planning....so they are new.


Diagnosis? Histoplasmosis (fungal infection in the lungs...nice...)....We will do serology Monday and hope for antibodies and then fluconizole for 6 months...with a follow-up CT in 6 weeks. If there are no antibodies and the nodes grow we have to...biopsy. Hopefully that will not be necessary. I was told that they are 99.99% sure it is not lymphoma recurrence. All lesions but 1 are in the field of radiation and it would be an "impossibility".

The rad onc called back Thomas and sort-of apologized: "I really, really thought it was anxiety. I see that all of the time". Thomas responded "yah, well that really bit you in the ass, didnt it" :> Sometimes I am just reminded of why I love Thomas so much :>

Quite frankly, I have found the stress to be unbearable and I really am just no longer "in control" anymore when it comes to the kids. I hate that I have no patience or understanding anymore...I have screamed, called names , sworn...you name it...I feel like my crazy neighbor....really. I just dont know how to handle all of this fear and worry and stress anymore and then Andrew and Amanda add these pre-teen antics to the mix and Alex is running in and out of the house schlepping toads and dirt....I find myself constantly exploding and I dont know how to just relax and reign it all in. I am do disappointed in myself. This has turned out to be a terrible summer and I feel very strongly that it is mostly due to me and my inability to be....me. I have become a bad mother....and I dont know how to change it because the anxiety and stress levels are so high.

Dont laugh, but I am even considering homeschooling the kids just to have more time with them. I feel like such a failure this summer and I just desperately, desperately want to reconnect. I have no doubt though tha thomeschooling likely would not provide that connection for us. What am I going to do though? I hate that the schoolyear heaps on its own damned stress. I cant do more stress. I am quite honestly at my breaking point.

A huge part of the problem is indeed also crazy neighbor. Our babysitter called the police last time she was here again after said crazy neighbor stood on her porch smoking and screaming at my kids that I dont love them, dont care about them and she cant understand why a babysitter would even want to be around them. She then threatened my sitter and was screaming and swearing when the kids were on the street that they were stalking her and on her property....She then told the police that my daugther had beat up her daughter , that our sitter was smoking and swearing and they we were trespassing. For the love of Gawd almighty. :! The only *good* thing to come out of this is that the neighbor who lives next to her on the other side approached me and asked if I was doing ok what with "crazy neighbor" and all. She basically told me she had seen all kinds of things and was so sorry for us. We had some other people over for a little mini-dinner party. They are colleagues of dh and also live in the neighborhood. They have been friends with crazy neighbors for 2 years and I was worried. Instead, they told us that they thought she is actively psychotic and have serious concerns and "we almost bought your house...we are so glad that we didnt."

Hey...it doesnt get quiet around here. What is up with that? I want to be bored...bored, bored, bored! I am ready to pack my bags and move into the country where I can be surrounded by deer and toads and friendly little field mice or something. :>

I have also been busy getting the kids ready to go to TX...which has provided me with some entertaining emotional upheaveal....I was terrifeid of them flying and being so far away...but they left this am at 6.18 and apparently had a great flight. The ups and downs of trying to navigate a custody arrangement with my divorced parents nearly sent me to the psych ward this week. My dad didnt want to share once we agreed to let them come and he insisted that the only way that my mom would be allowed to see them was if I extended the kids trip...and on and on and on.....I nearly had a stroke over it all. Then...he changed his mind, called my mom and gave her 2 days....and it was done.

This week I hope to get the house clean, paint the laundry room and I might try Scarsdale for 1 week since I wont have to cook for anyone really except Thomas...and he can fend for himself :> My weight loss is so frightfully slow that I am considering doing something to jumpstart it. It doesnt seem fair that I have cut my consumption down so dramatically and have seen such minimal results. Sure, I am losing about 2 pounds a week...but I am eating almost NOTHING.... Half the time I skip breakfast, I have a chicken salad for lunch and meat with veggie for dinner with no snacking. How can it be? Maybe I am just impatient though. I am an instant-gratification gal when it comes to dieting.

Anyway....I am really looking forward to a week of getting things done here and playing with Aidan and Zoe without having to chase after my pre-teens and my Toad-catcher.

Did I mention that Alex took a Toad with us in a teeny box to Kellys house? I dont know how the poor thing even survived the trip. I sent him to let it go at the park near her house and he said he had. At nearly midnight, Amanda came into my room and yelled "there is a toad in my bed". Sure enough...a toad! Sean had to watch me run out beside the house and let it go......

Ahhh...the Math family adventures.

kris

[PrincessFiona]

Wow...Is it really August 17th? Little Zoe is officially 4 months old today. It's hard to believe that so much time has passed since our little miracle baby arrived! At her last pedi appt. she still didn't quite weigh 9 pounds, but she seems to be growing every day now.

In the last couple of weeks she has started laughing and smiling and sometimes shrieking with joy when we play with her. It's easy to get caught up in the stress of the day-to-day chaos in our house and forget how blessed we really are...but...we are so blessed!




My breathing issues are slowly resolving. I'm now able to draw complete breaths without a problem and the pleural pain is much less. For awhile, I had some burning....now I just have very modest pain when I take a deep breath. I am definitely feeling relieved by that.

The fungal serology came back negative, so we decided not to treat with the fluconizole (also since my symptoms seem to be resolving!). There have been some discussions that the lesions may be from radiation...the only problem with that is that one of the lesions is outside of the field...I think that the bottom line is that no one really knows and we just have to wait. If they show growth on the next CT scan, we may have to biopsy. I'm just thinking positive thoughts that it will be fine...I think I'm right.

I feel pretty positive now that the difficulty breathing is resolving...I think it will all be fine. Nothing is more uncomfortable or anxiety provoking than feeling that you can't fill your lungs. It's an indescribeable feeling. Thank god it is going away.

DH told me that sometimes when doctors don't have an explanation they assume a problem is anxiety...he described a patient to me that had terrible leg pain who was eventually referred to a psychiatrist because the docs couldn't find anything wrong despite all of the modern tests. A few months later, they were repeated and she had some weird bacterial infection that was eating at her leg muscle....None of that was evident when she first started having symptoms and the docs thought it was purely psychological. He said that I have a good idea of what is going on in my body and that there is no reason to believe that the lesions couldn't have caused some inflammation and discomfort...and to trust myself.

I'm so lucky to have him :blush:

[PrincessFiona]

First and foremost, let me first apologize for my rum and coke induced blog.

Did I mention lately that we won't be moving anywhere soon? DH is pretty set in the choice of his post-training job despite the fact that I, quite frankly, don't really like where we live at all. This is a huge issue in our marriage lately because I find myself constantly searching the web for jobs (that I end up emailing him) and feeling disappointed when dh rejects them all without consideration. I have cried about it...we have fought about it...It is a taboo subject now.

His objection? He earns more here than possible in most positions anywhere now that he has been here 5 years and is a partner with roles in the hospital beyond 'doctoring'. I should be happy with the fact that I can shop without guilt (and I have :> ) and that we are considering buying a house in Germany now, adding on to our new house, etc. I should be happy, right?

right?

wrong!

I hate that I haven't found the peace here that I had hoped to find. I wish for dh that I could settle in and be *happy* with the life that he has made for us here. Why can't I just forget about me and focus on our family? I hate that I am so selfish and concerned about *me*. It feels so wrong. ...but money isn't everything.

Minneapolis/St. Paul are 1.5 hours away with no traffic...the german immersion elementary school, U of MN, Museums, theater, etc are all frightfully far away and I hate it. I need to be closer...I feel stifled by the smaller town life. St. Cloud State is an *ok* school, but truthfully, it doesn't cater to the best of the best or even the best of the mediocre It also doesn't offer PhD programs or any professional degrees. I feel stifled.

My letter from my PI inviting me to return to UF as his PhD student is now hanging in my own office space...something dh purchased for me a couple of weeks ago so that I can focus on my writing, sewing and scrapbooking. I'll have to add a picture to my next blog..I love my little office space so much. I love that my dog lays under the desk, that I have bookshelves full of my bio books, scrapbooking books and sewing/scrapbooking supplies..I love having my very own place in this house that belongs only to me.

Why....oh why...can't I simply turn myself over to the life that dh has made for our family. (yes, I helped by supporing him along the way...but it feels like such a small contribution now.) Why do I feel the need to exert my independence, use my own skills to create a life for me ??? Do other sahm's feel like this or am I just a bad mom????

Don't get me wrong...I'm not miserable to be around...I also enjoy my children, my husband and my house...I just feel that I have talents/skills/abilities that I want to use...and I feel guilty at the same time for wishing for time away to pursue that. I love my children and my husband. I am not an unhappy person.

Friday, I went to my first Creative Memories party in about 9 months and I had a great time being away. I came home and was so caring/understanding with the children and was so able to solve the problems that had happened in my absence. I wanted to be there with them after having a break.

I want it all...to be the perfect sahm who does crafts every day with her children, has long, emotional conversations with them and then....wins the nobel prize in her spare time .

The neighbor situation had gone from bad to weird. After doing some cleaning, I found two books that crazy neighbor had lent me when I was pregnant with Zoe. They had personal papers of hers in them and so I returned them to her one evening...which resulted in her talking to me for over 1/2 an hour about how she hoped she was pregnant again, had used an ovulation kit....blah, blah, blah....suddenly, her kids were in our front yard again, our daughters were playing together etc...and it all feels frightfully weird...particularly considering the fact that she spread such nasty rumors about us. I can look at her and see that she is depressed and not ok...that she is struggling with her mental health..and so I'm trying to be kind and yet have some sort of boundaries with her. She seems so miserable and so needy....and I am so in need of peace in our neighborhood and our family that I have allowed her back into my life and I know that I will regret it. At the same time, I prefer having crazy neighbor IN my life to having her on the outside where I can't....control her :!

My breathing problems have intensified again the last couple of days and I'm not sure why. It's not has bad as it was, but it is definitely worse than it was. I had a dream that I was at the end of my life and I was dancing with....Jack...from Will and Grace It was this sad, sad song and we just were dancing knowing this was the 'last dance'. Obviously, this is just my fear at play and things will be fine...I'm convinced of it...sort of.
I suppose this is the new normal...but Thomas has warned me that if the CT in a few weeks shows growth I'll have to go through a lung biopsy ...and probably a needle biopsy through the chest wall where I'm awake nd not a bronchoscopy. :! Why does he have to tell me this? WHY? He is so concerned that he sometimes calls me multiple times during the day to say "how is your breathing" and then tells me that he is sure it is "nothing".

I'm sure it is nothing...I'm sure we're freaking out over histo or some crappy bronchiolitis or something...and yet in the back of his mind...the bakc of my mind...is...bone marrow transplant...him raising the kids by himself...me dying. It is there. It is the pink elephant. I cry about it when I'm driving the kids....when I'm gardening...when I'm sewing....

and yet...It is...in all likelihood...with 99.99% certainty....nothing.

And still, I wonder if I will see Zoe go to Kindergarten, if the last memory my children will hold in their memories is that of a depressed mom who struggles to get through the day-to-day stuff because she is so pulled down by all of this........

Life can be so hard sometimes....


Kris