Thanks to everyone for your calls and texts the past few days.  I apologize for not getting back to each of you, but I've had a busy past 3 days.  My port surgery went well, I'm still a little sore, but I can move my arm pretty well, with little pulling in my chest. You can't really tell anything is there.  I had 2 dr appts on Thursday and today, and along with that, had other random appointments, had to work, and go out to dinner with some fantastic friends :) (Carini's...yum!) So, here is my update.

I went to the dr yesterday at St Mary's. My CT scan of my abdomen and pelvis came out clear, and my PET scan confirmed the hot spots I have in my left supraclavicular area, chest and axilla, but there is no other evidence of any other lymph node or organ involvement in the rest of my body.  The bone marrow biopsy came out negative, as well.  This is all good news! :)   I have Stage 2 lymphoma.  Because my pathology reports favor the non Hodgkins type, they will treat me with as Diffuse large B Cell lymphoma (DLBCL).  This involves a regimen of chemo along with a targeted therapy drug.  It is called R-CHOP.  R stands for Rituxan, and it targets the B cells and essentially blows them up.  This is the drug they will give me next Wednesday, and it can take4-6 hours to push it.  It takes so long because they have to monitor any reactions to the drug.  If you think of the cancer cells as bubbles in my body, and as this drug reacts, it pops the bubbles and releases toxins.  They may have to give me benadryl, wait to push the drug until the side effects wear off, etc.  But it is killing cancer cells, so even though I may not look pretty while getting it, I appreciate what it is doing.  The second day, Thursday, I will go in for the CHOP portion of the treatment, which are the chemo drugs, and those should only take 45 min to an hour.  If all goes well with this first treatment, then I can get the rest of my treatments all in one day.  I will get 6 treatments, every 3 weeks. So, I could be done with all of this by mid January.  Yay! I'm going to Disney world! Well, a Disney cruise, in March ;)

So, I mentioned that I start next Wednesday.  I'm happy about this, because I need to get started.

I went for my second opinion appt at Froedtert with Dr Fenske.  While Froedtert is nice with a great reputation, we waited an HOUR AND 1/2 for our appt to begin.  Once we saw the dr, it all went well.  Their pathologist did say that the sample did have characteristics of both HL and DLBCL, but they actually thought it did favor DLBCL more.  So, they agree with the St Mary's protocol, he pretty much said everything Dr. Shah said re: treatment.  Yay! I'm sticking with St Mary's.  Dr Fenske and Dr Shah also both said they have worked with each other, and if necessary, they can consult each other, so that made me and Ryan feel better about everything. Plus, after that long wait, and I felt that Froedtert had less of a personal touch than CSM, I feel even more confident going with CSM.

Dr Fenske did review all the stats and prognoses with us, and he assured us that even though Hodgkins get the reputation of the "best" lymphoma to have, DLBCL is also has a very good outlook, and given than I have essentially zero other risk factors and am low on the IPI risk scale (google it, if interested), I can achieve full remission and be cured just as well.  So there. :). DLBCL is a very aggressive lymphoma, but given that, aggressive lymphoma also responds the best to treatment.

So, there it is.  I'm starting chemo on Wednesday.  My Mom and Ryan will be going with me.  I will let you all know when my next treatment dates come up, I think I'd rather get through this first one with my family, since it may be a rougher one.  

I plan on enjoying this weekend, maybe I'll get my sushi this weekend, since I won't be able to eat it while on chemo (raw fish=potential bacteria=bad news), and I'll work Monday and tuesday, before I take the rest of the week and weekend to go into combat with lymphoma.  Thanks for all your prayers and well wishes! Keep them up, I'll need them next week, fo sho! :)

Xoxoxo

Before and after. Note my Creepy Cole smile. Ehhhh.

Ok, moment of weakness here..

Whhhhhhhy meeeeeeee? Why do I have to do this? Why does my husband, my kids, my family, my friends have to go through this with me? They don't want to do it, either! It's not fair. I know I have been reassured it is not true the few times that I have let it out, and I really don't think it's true most of the time, but a little part of me still can't help think sometimes that I have been an awful person somewhere along the lines. Maybe not outwardly, but even some of the thoughts in my head. Ohhhhhhhhhhhh.  I hate this. 

I'm just feeling sorry for myself right now. It happens now and then, and it's bound to happen. I become Iron Woman today. I get my port put in, and it's just making me feel a little bit closer to that title of becoming an official cancer patient. 

I dropped the kids off with my parents last night, because they are going to watch them for a few days so I can get some rest. Kirra was so sad, she was trying so hard not to cry when I dropped her off, but she couldn't hold it back anymore. It made me feel so badly. She is usually my easy one, she loved to stay overnight with Grandma and Papa, and often told them she'd like to live and go to school there. I don't know if it's her age, or maybe she knows that something is going on with me, but it really broke my heart to see her so sad. And it confirmed my reason that I need to fight so hard for this. I NEED to be here. I can NOT leave my kids, husband and family behind. They all need me, and fuck it if I'm going to let this lymphoma get the best of me. I'm tired of it already. I need it out and gone and behind me. I will do my part and be the best little patient I can, and I will fight the shit out of this thing. I just can't help but have moments like this when I feel sorry for myself. Maybe that's not what I'm feeling, I guess I'm just more pissed and mad. I don't feel sorry for myself, and I don't want any of you to feel sorry for me, either. I really don't. It's funny how "I'm sorry" is just a universal phrase that everyone says, for something as minor as stepping on a toe, or for when a loved one passes, or when someone gets diagnosed with cancer. I'm guilty of saying it all the time. I am a self proclaimed Guilty Catholic. And I don't fault any of you who have said it to me, what can you say? What I'm now trying to get across  is that I don't want anyone to feel like I need sympathy or empathy for what I am going through. I want NO ONE else to ever have to go through this, as much as I can hope for it. Just know that I am going to be strong, and while it suuuuuuuuuucks, I can do this. I can. I really can. If you start to feel sorry for me, stop yourself, go scream really loud outside (or inside), do some fist pumps in the air, stamp your feet on the ground, or just eat a lot of chocolate chip cookies, because I am not going to be feeling sorry for myself. So you shouldn't either. 

So, now I'm done. I won't promise that this won't happen again, I know I am capable of crying many rivers over this (Justin Timberlake, you can come serenade me anytime, while I watch you dance), but for now I am done. Gotta go get ready to get the good drugs and become Iron Woman :). Then I'll come home and watch hours and hours of the Cosby Show on Netflix. 

Xoxoxo

Bone marrow biopsy went well on Friday.  It didn't hurt at all while the pathologist did the procedure, thanks to good drugs.  I was sore afterwards, and very tired, it felt like I got kicked by a donkey in the hinder. It's pretty ok now, I was able to go to the gym today and work out on the elliptical and run a mile on the treadmill.  It felt good to exercise, and I need to keep it up so I can stay in relatively ok shape.

Wednesday is my surgery for my port placement.  I got a call from the pre op nurse today, to ask me the now routine questions prior to any procedure or surgery I have at the hospital. She asked me the question, "how many surgeries have you had in the past?". Funny, I had none prior to September 7, and now by this Wednesday, I will have had 3.  And every nurse that asks about my past medical history, always remarks "you are so healthy, besides this darned thing you're going through".  Yes, I knooooooow.  That's why it's so frustrating! 

My 2 dr appts are on Thurs and Fri, too.  We will hopefully be making a somewhat easy decision on who to go with this weekend, and I may begin chemo next week?!  The sooner, the better.  Maybe it will all feel real by then? I read a few posts on a lymphoma forum that I just joined, and it looks like my first chemo treatment could last between 6-8 hours. Wow. Good thing I have so many tv shows to catch up with on Hulu already, it looks like I'll need something to pass the time away.  I wonder if Jimmy John's delivers to the cancer center? Subs so fast you'll freak the poor cancer patients out of their BarcaLoungers.

So, I'm sure you'll all be reading more by the end of this week, I will update as soon as I can re: the surgery and the dr appointments.  Keep up with the prayers and positive vibes, it is helping so much, I can feel it! Thank you, thank you!!

Light The Night Walk.

>Because my friends are full of awesomeness :) and I know others would be and are full of awesomeness, too, I'm sharing this link for the Light The Night Walk that takes place in Lisle on Sunday, September 25. If you'd like to join them by walking, please do! And if you're able, donate to the cause, helping support research for blood cancers, and families that are fighting them, too. I wish I could come down for the walk, but know that I'm there 150% in spirit :)


pages.lightthenight.org/il/WSuburbn11/Jellybeans94

Bone marrow biopsy today :/. Hoping and praying I'm all worked up about it for nothing, and it's not a big deal. I asked Ryan this morning, that if it does hurt as much as I fear it may, could I punch him in the hip, too? He asked why? I said so that he could commiserate with me. So, you all should pray that my husband isn't limping around this weekend, too.

Today I rode my bike to work. I had 2 patients to see, and they live within a 1-2 miles of my house, so I decided to bike it today. Most of you know I work in home care, so I'm usually driving all over the city. Having only one vehicle was a big part of that decision, and Ryan had to work at St Mary's Ozaukee today, so instead of waking the kids at 6:30 am and risking another bus incident with Cole, I told him to take the car. It's a beautiful day to bike around. I surprised the heck out of my patients, though, they were expecting to see a car pull up. I told them I was being green. They probably think I am a hippy. (No offense to you hippies. Hippies do fun things!). Then I rode my bike to Trader Joe's and brought my groceries home in my back pack. Huh, huh?!?!

This week begins my barrage of tests. I had my PET scan yesterday. After my MUGA scan and CT scans tomorrow, you may be able to find me glowing in the dark from all the wonderful radiation that has soaked through me. I just got a call for my surgery time for my port placement next week. I was happy to find out from a great family friend who is a nurse that the port is pretty small, and won't be a huge thing bulging from my chest. I was also unhappy to find out that I could have this port in me for more than just the time I'm having chemo. Like 2 or more YEARS. Ehhhhhhh. Well, at least will come out at some point. My goal in life was to never have anything implanted in my body permanently, like a pacemaker, or having knee or hip replacements, if I could help it. I will have to have a little party the day that is removed.

So, nothing really new to report on this front. I'm feeling good still, although I did feel a few more bumps in my arm pit this weekend :(. What can I do about it now? It feels like I have been kicked in the arm pit, it's just sore. More annoying than anything. I just keep telling myself that it will be gone soon. No need to worry. Chemo will come in and shoot it all up, bam bam bam! I've got you now!

Here comes my boy, off the bus :) catch you all at the end of the week!

Oh, and happy birthday to my roommate from college, Jill, and happy anniversary to Terri and Charlie! Nothing but happy wishes for all of you on this beautiful day. Xoxoxo.

I went running today for the first time since all this stuff started happening. It felt pretty good! I did feel some pulling in my incision area, where they took the biopsy last week, but then I didn't notice it after about 1/2 mile. It got me wondering, though, how would it feel to run, once I had my port put in? I may have to come up with another exercise regime. I'll try it, though. I doubt pole dancing would be any better... And the Party Rock Anthem is a great song to run to. I broke out into a shuffle a few times, gotta keep up with my dancing skills.

One of my good friends from high school's mom had lymphoma about 7 years ago. I went to talk to her and her husband today. We now have a little club of 2 :). I hope we never have to teach anyone else the secret handshake because we ain't got no room for 3. It's exclusive, our club. It helped to talk about the things that I was going through, my feelings, what to expect. I need to look into some other resources for support in the Milwaukee area. Ahhhhhh. I'm still feeling good, though. Physically and mostly mentally. I'm glad I'm writing my thoughts down now, so I can look back on this a month from now, and see where I was. I'm hoping in a month I will have at least one treatment down in the books.

I have all my appointments set up for next week, for all the testing, and it looks like I'll have the port placed on the 28th. I have my follow up appointment with Dr. Shah at CSM on the 29th, and I have a second opinion appointment at Froedtert with Dr. Fenske on the 30th. So...at this time, in 2 weeks, I will be making some decisions on which way to go. I have to go with my gut, and who I feel comfortable with. I hope I have some more clear cut answers so that the decision won't be difficult to make.

In the meantime, I am in Wheaton this weekend to watch my Moms and Bro run the Fox Valley Marathon. She is trying to qualify for Boston AGAIN. What an over achiever. Gail, ahem, I mean JOHN, will be running with her, making sure she gets her banana and that she can break that 4:00 goal she has. GOOOOOO MOM! And GAIL!!! Damn, I mean, JOHN!! And tonight I get to see some friends, which I'm excited about :) It'll be fun!