Wednesday, September 26, 2007

Another bend in the road...

Well, the thing about cancer is that it is unpredictable. If it were straightforward and clear, there would be a cure, and everything would be much more simple. My FIL had an old colleague look at John's biopsy slides and she reported that there is the presence of other cells that are not present in Hodgkin's disease. Basically, the way that Hodgkin's disease is identified is by the presence of certain cells called Reed-Sternberg cells. Upon initial inspection, these cells were present, but there are these other cells (cd20) that are also present. So, the bottom line is that his diagnosis is not as simple as it first presented itself to be. You can imagine my disbelief in finding this out. All my previous worries began to flow back like the flood gates had been opened. I felt like we were finally reaching a place where John could begin treatment and on the road to recovery, and now they were telling us he had something different.

They have diagnosed him with a so called "Greyzone Lymphoma." Basically, he has the classic symptoms of Hodgkin's, but he also has the presence of these cd20 cells,which are present in b-cell lymphoma. Since this is a rare form of lymphoma, treatment is tricky.

We are lucky in many ways though. The chemo that treats Hodgkin's has not shown to be effective on this greyzone lymphoma. Had John started treatment without knowing this, he could have potentially gone through the whole cycle of chemo without it working, and perhaps having to undergo all the diagnostic tests again. In addition, my FIL found a study at NIH that looks particularly at treatment for this type of lymphoma. We spent most of today with the researchers, talking with them about the treatment and study.

Tomorrow will be another long day. We'll be heading over to NIH in the morning, where John will have additional blood work, x-rays, CT, and then have a blood transfusion (he's very anemic and this will help with his fatigue). Friday he will meet with the doctors and begin chemotherapy.

The treatment is pretty rigorous and there are many different steps in a cycle. He will undergo 6 cycles, which are each about 21 days long. One stage requires him to return to the hospital every 24 hours for each dose, and another requires him to give himself shots and have his blood drawn every other day. I hope that once we get through on cycle we will get the hang of things, and it will become part of our daily routine. It's complicated and overwhelming, but I really feel that we are so blessed to find such a successful study.

I have no idea what the future holds right now. John has to figure out what will happen with work and if he will have to take a leave of absence. If he does, I may have to work part time to supplement his income. The doctors say that people generally feel pretty good and respond well to this treatment and continue to work. The only problem is the visits to the hospital and John has very few sick days left. I know that things will work out and that we will be provided for. The unknown is always scary, but I have to have faith that things will be okay. We're hoping that John will start feeling better after his first treatment, and the doctors are hopeful that he will.

I'll be sure to let you know how things are going. Thanks for all the support you guys have been providing! I really cannot say enough about the kindess, prayers, and support that I have received in these last few weeks.

24 comments:

Joyce at Salisburys Corner said...

You are both in our prayers. Fingers crossed that they will be able to help more tomorrow.

Big hugs

jessi said...

And we'll keep them (prayers, etc.) coming...

I have a friend who defeated stage 3 cervical cancer last year - I learned so much from watching her go through that with so much courage and faith. Keep your head up! And if you need encouragement - we'll be here for you!

TinkerBlue said...

Katie and John,

Keeping you in my prayers for a speedy diagnosis and successful treatments.

Meg said...

Sending my love and support to you and John and the baby. Lifting you all up to His healing presence.

Hip Mama Crafts said...

I know the uncertainity is hard... I have 3 people in my life on remission. So, I hope you'll keep your head up, you are in my prayers... ~hj

Bren said...

Good luck today and I hope everything goes well. My prayers will be with you and your family through this time.
:) Bren

Sarah and Jack said...

Hang in there Katie, I am sure this little bend in the road is scary, and I know you can do this.

beki said...

Oh Katie, my heart and prayers go out to you.

Diane said...

Katie, my thoughts and prayers are with you. I know personally what you are going through. Let me know if I can do anything for you.

Anina said...

I think about you every day. Thank goodness for your father-in-law!

iSew said...

Wow, What a roller coaster. Sounds like he's going to be able to get through it though. Always thinking of you guys.

I am Jen said...

I cannot even imagine right now...Still prayer and thoughts are flowing in your direction and also a big clump of fabric. Take care of yourself too...

lera said...

I just really don't know what to say. I'm sorry that you keep finding out different stuff. I'm so sorry that you and your family have to suffer through this. Cancer is so unfair. I wish it were all straightforward and there were cures.

Felicia said...

Thank you for letting us know what is happening. I'm sending positive thoughts your way.

Lesley said...

We will be praying for you and wish you all the very best for the coming week. xx

Christina. B said...

your in our prayers.

Strawberry Cat said...

I wanted to let you know that my dad got into a bad motorcycle accident at the beginning of the summer. My dad has always been a free spirit, and he didn't always have a job (so no savings) and definitely didn't have insurance. Luckily he got covered by some magical state aid, but the very, very small town I'm from had a benefit for him. They had a spaghetti dinner (his favorite) that asked for donations, a silent auction, and local bands played all day and night at the local bars, who gave all their tips to my dad. In that one day my dad and his fiance received $12,000 from family, friends, and random people who heard about the benefit on the radio. That way his fiance was able to spend a lot of time with him while he was in the hospital and put a down payment on a wheel chair accessible home.

So know that in times of need people become more generous than you can ever imagine. I hope things fall into place and you guys are able to focus on treatment and recovery rather than if John is able to keep a job.

Once again, I'll have you and your family in my thoughs.

ellen said...

my thoughts and prayers are with you both.

lindsey said...

Oh I am so sorry. You are lucky that your FIL had his friend take a look. It makes things scarier now, but probably much better in the long run. Again, please let us know if we can do anything for you!!

Kieran said...

He may be able to get disability from the government. One of my friends is going through chemo, and he gets disability from the state to supplement him while he can't work. I hope things work out with the NIH.

Christina said...

You're both in my thoughts.

Chara Michele said...

Keeping you both in my thoughts & prayers...

I wish there was more I could do though, words just don't seem quite enough at a time like this.

Jody said...

You remain in my thoughts.

African Kelli said...

Oh my! I am so sorry you are going through this, but know you are in my thoughts. I believe in miracles and I also have the utmost respect for chemo. My friend Rex was saved by chemo last year when they found Hodgkins.
I'll pray you've already found the right treatment.