Wednesday, March 26, 2008

My First Week without treatment

Early this week the radiation in my armpits gave up its grip. The pain and tenderness went away and in its place, my graying skin began to peel like sunburn. The new skin underneath is pretty pink and smooth, though. Nice! I’m guessing that by tank top season I’ll be good to go. That was the last of my side effects beside my slightly puffy, which I’m going to see a physical therapist about next week.

I actually did not think much about NOT driving to Bath everyday for radiation. I was still busy, which made me wonder how I made time back then to go to Bath everyday? Simple. I just did. We all just do what we have to do and adjust. I did notice the fact I only had to fill the gas tank once last week. I was pleased to see how relatively little fuel I was using daily. In some ways I am glad I have been able to move on from treatment so quickly and easily and back into my life’s routine. On the other hand, I should pause to take a breath each day at the time I would have been going down to radiation and be grateful that I don’t have to.

Post Cancer Life lessons For All – Lesson #1 – Acknowledge that which you are grateful for. Sounds like Thanksgiving, and it is, only more often than once a year. It will often bring a smile to our faces to think about how good we have it. Remember the little things, too, like your indoor plumbing, your pet, the local green space, and the friendly barista who makes your coffee.

On the wedding front, Dennis and I are still in the spreading the news phase. We have thrown around places and dates but are no closer firm plans, other then to say fall…probably. First, we are tackling the guest list. Getting the tough decisions out of the way. Also, Dennis bought be a lovely diamond for my engagement ring and we’ll be going back to out friend Luke, the jeweler, donated gold in hand (thanks a bunch family!) asking him to cast 3 rings for us. He will recycle the gold and mix it with silver for durable, malleable, “white gold” looking rings.

Oh, and I already have my dress. I wasn’t even looking for it yet, but I guess it was meant to be. Before I tell the story of my lucky dress, I must warn the fancy people that they might be appalled by what they are about to read. My dress comes from Marden’s in Rumford, Maine. We didn’t end up going snowboarding on Friday because it was blowing 50 mph, so we went to lunch and stopped to check out this new store on our way out of town. I saw these simple ivory “prom” dresses and my brain started clicking. Why not, I said. Do I care that the tag reads “for Target”? No. I’m not so presumptuous. The dress actually looked great on me! And fit perfectly. No alterations necessary! The kicker is that it cost a whopping $10! Are you fancy people still breathing? I know some of you are worried, but you’ll just have to trust me. I only need the thing to hold up for a few hours, right?

Saturday, March 15, 2008

Ecstatic to be DONE!

Hello. As my fellow posters have dutifully made you aware, I am done with Hodgkin's Lymphoma treatments for- hopefully -ever! Tuesday was a very exciting day because it was my final (#20) zapping AND my "wrapping it up" visit with my onc. My mom and step-dad sent a beautiful bouquet of flowers to the onc's office for me to bring this process full-circle. If you'll recall that in the beginning, they sent me flowers on my first day of chemo. Holding the vase in the waiting room brought me back to that day and, briefly, the nervous feeling I had then. I smiled to think how far we've come.

I will not have to report to any oncologist, radiation technician, RN, or phlebotomist for three whole months! My insurance company gets a breather from being a bottomless ATM.

I wish I could say that I am back to normal and treatments didn't change my body, but I'm not, at least not yet. My pesky right arm is still not the same size as it once was. I notice it puffs up a little more when I exert the arm, say cleaning the house or throwing sticks for dogs with it. Nothing like it did when there was the clot, but disturbing, nonetheless. I think we were all really hoping that my arm would be happy normal again once the port was out. Well, that was over a month ago and I didn't see any additional shrinkage with the port out.

We did another ultrasound study on Tuesday and I am waiting to speak to the right people about it. In my mind, the right people are the ones who dealt with my clot in the first place. So far, a different technician did the study, a different radiologist interpreted the study (no clot anymore, duh, I knew that), and my onc, who was kinda on the sidelines for the clot ordeal, will get the information and make the decision whether or not I can stop the Coumadin. I'm sure everyone in that chain is competent, but logically, it makes sense to me that because we are still dealing with the same issue as before, we will have a more complete picture of what's going on if we go back to the original circle of doctors. Yes, living up to my nickname "voice of reason". Someone has to be.

The other side effect I am still dealing with is radiation burn under my arms. Radiation in the body is cumulative, so even though I stopped getting radiation to the spot a week ago, the irritated skin has just been getting worse. I find that frustrating. At some point, healthy tissue will prevail over radiation and the underarms should be on the mend. The technician said the effects of radiation could be felt for up to a month! Yuck.

All in all, though, it feels really good to be done with Hodgkin's. Dr. Chase said some patients actually get depressed at this stage. The drama is over and often the support system dissolves. I don't think I have to worry about that. I only see it as positive, still. I'm certain I will have butterflies in my stomach come June when I have my first post-Hodge CT scan. Until then, life goes on and IT IS better without the Hodge.

On Tuesday night, we got online with my sister and her husband via Skype which allows you to essentially video conference and we did a champagne toast to the end of a long, hard process and to future health. Below is a screen shot of the toast.

I would like to thank everyone who reads this blog and tell you how therapeutic blogging has been for me. Special thanks to those who commented. I enjoyed your input. Whether or not you commented, though, everyone was the friend who just listened. And that was often was the best medicine. My deepest thanks to my lovely sister who made this blog possible and was the devoutest of "listeners". Also, I couldn't have gotten through the past six months without the real life support of my parents and most of all Dennis.

I will make a formal announcement here, that Dennis and I have decided to make it official. We'll be getting married! Don't know when or where, but soon.

Also, I will be keeping this blog for awhile because I believe that life after cancer can be just as confusing and dumbfounding as life with cancer, yet there is far less support for that. Surviving cancer has given me a fresh start with fresh eyes to live better than before. I don't really know what that really means, but I believe it, and I'm going to figure it out. I could still use a support system as I stumble my way into this. First, I will need a new title to this blog. Perhaps it's as easy as taking out the "soon-to-be". Dunno. Does anyone have any suggestions what the post-Hodge blog should be titled?

In parting, here is my first hair update. I'm back to looking like a boy, or GI Jane! I'll take that.

Wednesday, March 12, 2008


I am sure Candace will be writing a long post when she gets a chance to slow down from her busy work week but I just have to share the big news...Candace is DONE with treatment. Dr. Chase gave her the all clear and she does not have to go back for scans and a check up for three months . Radiation was MUCH easier on her than chemo and the only real side effects were some tender skin and mild fatigue, which could be attributed to the two hour drive to and from treatment every day for four weeks. We should know today if she can get off the blood thinner as they did give her an ultra sound to check out blood flow in her right arm and we will get the report today. If she gets to drop the thinners it is back to the slopes next week!!
Be well

Thursday, March 6, 2008

Link to another fellow fighter

I have just added a link to another cancer fighter who is currently going through a stem cell transplant. Please check out Bekah's site and give her your support as she goes through this ordeal.

The Final Countdown

Yes, you read that right, people. Sis is down to 4 treatments!! She gets one more "regular" rad today and then it's three targeted zaps and she's done. D-O-N-E. Such exciting times!

We have plans to toast with champagne over the internet (praise webcams and skype!). She has been such a strong trooper throughout this whole ordeal. Thank you to everyone for your continued support!

I'll let Sis fill you in on all the details, but I didn't want to let the approach of this milestone float on by without commemoration.

Sunday, March 2, 2008

Holy Snow Batman!@

Dennis, Sadie, and I went to visit my parents in Auburn, Maine this weekend and we were shocked by the amount of snow they had. On the coast where we live, we have perhaps 6 - 12 inches on the ground. They have feet and feet! Apparently the mountains, thus the ski areas, have even more than my parents do. I wouldn't know first hand as I can't bear to go and see other people enjoying themselves skiing and snowboarding in the best conditions we've had in YEARS! Arrgh! I am going to see Dr. Chase March 11th and I am going to twist those words I want to hear right out of her. I'll use jedi mind tricks to manipulate her thought processes until she concedes to allowing me to wean off of the Coumadin. Right arm be damned. It is good enough!

Radiation has been extended to next Tuesday because Dr. #2 was feeding me the wrong information for a week. Dr. #1 originally told us 20 days, three weeks of full mantle and one week of a "boost" they call it to just my mediastinum. Dr. #2 said more than once to me that I'd be completely done after 17 days. I wanted to believe him and rationalized that the doctors probably spoke and changed their minds about the total treatment. I didn't want to ask the stupid question about the discrepancy, but it would bug me to no end if I didn't get it cleared up. So, I questioned Dr. #2 about his belief of 17 days and informed him of what Dr. #1 had said in the beginning. As he was verbally reiterating the 17 day thing, he was flipping through my chart and stopped to read an early letter penned by Dr. #1. It confirmed that Dr. #1 did in fact indicate a recommended boost to my mediastinum. (Of course they always think the patient misheard or misunderstood) The conversation I thought they must have had, they never had, because they are merely human and fail to communicate as much as the rest of us. So what if my lack of communication means dinner doesn't get started on time and theirs means someone is over or under radiated? No biggie. The stuff just causes secondary cancers. Dr. #2 said he was going to have to talk to Dr. #1 about it.

Enjoy these crazy snow pictures taken today and I'll post again soon.