TO SUM IT UP

I’m actually writing on my own blog…………………… As of now the treatments are finished.  I also found out I don’t have to do radiation, which is such a blessing.  They try to make it sound like it’s a cake walk compared to chemo, but I’m glad I didn’t have to find out. This journey has been a hard thing for me.  But then I realize that it’s hard for everyone and even harder for some.  Mostly, I’ve been blessed beyond measure.  The side effects weren’t as bad as I know they have been for other people.  All the horror stories we hear sometimes make us afraid before we start.  Not that it was fun or anything, but I learned a lot from the experience.  I learned I was stronger than I thought.  I didn’t always handle the situations the best but I tried to stay as positive as I could during the hard times.  As I said, it wasn’t easy but the important thing is we made it!   The only side effects that I still have are extreme fatigue and a dry mouth that is really annoying.  My feet are still numb and of course, there is no hair on my head.  I strongly believe that has been the toughest part.  Sometimes I feel that I come across not as grateful as I should be but I know that I have been blessed in many ways. And speaking of blessings, all of you have been such a big part in my story.  I’ve been showered with so much love and concern from so many.  There is no way to thank all of you except to say that you have helped me get through this.  It’s ironic that on some of my worst days, I would receive a phone call, a visit, email………all that helped to buoy me up.  For these things, I am eternally grateful.  Friends and family are most important to me……precious and priceless.   My own little family has been so supportive and so helpful during this time.  The kids are always calling or stopping in to see what I need.  The little grandkids have given me extremely warm hugs and kisses.  They’ve all been so loving and tender.  I’m blessed to have the best kids …I’ve often said I don’t know how I got so lucky to be their Mom.  This has proven that once again. Thank you so much for being here for me and my family.  We appreciate it so very much. Also I am so very amazed at the doctors and nurses that work in this profession.  I can think of a lot of kinds of medicine that would not be so taxing.  My nurse, Shelley, was so fabulous and so upbeat, but yet would answer things for me in a most tender way.  They never see us well.  They meet us when we are sick and scared to death and find a way to help us understand and learn about this disease.  I asked Shelley once why she chose oncology.  She said, “It found me.”  I will be indebted to her forever because she made something so dire a little easier to handle….and that alone means a lot. So, as I said 3 paragraphs ago……this is the plan.  I will see Dr. Charndramouli again in August and we will set up a schedule for follow-up appointments.  I think it will consist of blood work, then a scan in 3 months, then more blood work 3 months after that.  We will continue that for 2 years and then have appointments every 6 months.  He said in the beginning that this cancer was not just treatable, but curable.  So I asked him where we stood.  “In five years I can tell you the answer to that question.”  I’m sure my mouth dropped….I wanted to be cured now!!!  But I guess that isn’t the way this awful disease works.  So, we do what we’re told and hopefully things will turn out the way we want. Once again, thank you.  I can’t say it enough.

Chemotherapy-CHECK

Yep...Mom's 6th and final treatment was completed on Monday May 21st.  She will have the regular blood draw next week and then the following week on the 4th she will have a pet scan.  After the pet scan results are back then Dr. C will review the results with a radiologist to decide on radiation.  He doesn't think it will be necessary but didn't want to make any promises.  We will take what we can get! The fact that Chemo is over is a big plus.  Of course, it will take her a few weeks to recover from this final treatment but just knowing it is the last time makes things a little easier to deal with.

Ringing the bell

Nurse Shelly..been there everytime for treatment, funny how close you get to these people...even though we told her we really don't want to see her again. :-)

Best.News.Ever

So Mom had her 4th Chemo treatment on Monday the 9th. The plan was to do a pet scan following that treatment to see if the spots in her abdomen were still present. If they were, then a biopsy would be necessary to see if the spots were in fact Lymphoma. She had the scan on Monday, and Dr C. called today with the results. Well no biopsy necessary! The spots in the abdomen are gone!! So...she has to have 2 more treatments for sure since it was present in the bone marrow; however 2 more treatments is awesome. He said we could talk more after her next treatment about radiation. We don't know yet if she will have to do it. If she does, we will take that over Chemo.
So finally some good news, no GREAT news!!!!! Thanks again for all of your love and support.

3 treatments down...3 to go?

Mom had her third Chemo treatment today.  She had a pet scan last week to see what progress the Chemo is making.  Dr. C said that the lymph nodes that showed up in her abdomen on her last scan are still there but he thinks that they are sarcoid, not lymphoma.  If it was lymphoma it would be shrinking.  So...since it did show up in her bone marrow she has to have a minimum of 6 treatments but 6 may be all she has to have.  After her 4th chemo treatment (April 9th) he will order another scan to confirm the diagnosis of sarcoid.

Sarcoid is defined as..
Also called sarcoidosis, it is a disorder characterized by the formation of small inflammatory nodules (granulomas). The nodules can occur just about anywhere in the body but the lungs (lung sarcoidosis),skin (skin sarcoidosis) and lymph nodes are usually the most common locations. (rightdiagnosis.com) 
Since Mom already knew she had some sarcoidosis in her lung we expected to see that on the scan.  The pet scan only shows inflammation (which could be lymphoma or sarcoid) and the only way to determine what is what is to do a biopsy.  It is too dangerous to do a lung biopsy or to reach the lymph nodes in her upper abdomen that are showing inflamed.  But the truth is it really does not matter.  We are doing 6 treatments no matter what and Dr. C is more than confident that we are treating the lymphoma that he knew was there.  He said that he will determine if she needs radiation after he sees the next scan.  (when she heard she might be done in 6 she was relieved because she wouldn't be sick for Erda Days...yes she really cares about that little town)

So the good news is the treatments could be 1/2 way over...that is a huge milestone! Mom did ok with the second chemo treatment, she got a migraine again and had some more dizziness but the dr thinks that could be from the prednisone...and from her blood sugar fluctuating.  She doesn't really have an appetite most days after chemo and it is hard to force feed yourself.  She is working on this though and has protein shakes to supplement her meals.

All in all things are going really well.  She has her bad days but her good days far out weigh the bad ones.  If you didn't know she was sick you wouldn't be able to tell.  She wears a wig most of the time and it looks great on her.

Again, thank you for all of your prayers and support.  There are so many people that care about our Mom and we love and appreciate each one of you!

Hair Loss

On Tuesday I washed my moms hair and tons of it was falling out. She knew it was going to be bad, because she had been loosing so much over the weekend.  I was in shock and how much was in my sink and it just kept coming out. Then as I combed it and blew it dry......GOBS were coming out everywhere. It was very difficult for her and pretty upsetting for me. I've done this chemo thing before with other clients, but it's just a little different when it's your mother.
She had purchased a wig weeks ago, and we started to work on it and make it look a little more natural for her. I think she looks great in it and the color is very close to what she had. I won't say her natural color, because only I, know what that color would be! :) It's going to take some getting used to, but I know it's going to be O.K.
It was definitly a REALITY check for both of us. Makes all of it so much more real and I think it's one of those hurdles that you have to jump over......as you go through the chemo process. Hair is such a part of who you are as a woman, and I can't even imagine loosing mine. But, my mom will be used to her new look in no time :)
Thanks again for all of your continued support and love.....it means the world to us!

posted by Kari

Weekend fun with Glen & Marcia

Glen and Marcia came up to visit my mom this past weekend. We went to Canyon's Basketball game Saturday morning and then swimming @ their hotel. That night us girls went to eat @  Cafe Rio and went to see "the Vow." I don't think the Ritz Theatre has changed much since Marcia was last there.....40 years ago! ha ha  On Sunday we had a dinner at my house (Kari). It was good to see them. Justin came with them and all of our kids LOVE him. Peter also came out from Salt Lake to see everyone. Susie and Allen also came. It was fun to be together and I know it meant a lot to my mom that they made the trip up to see her. Glen looks so good and seems to be feeling O.K.

posted by Kari

Chemo Take 1 & Update

Mom had her first Chemo treatment on the 6th.  She was nervous because her chest was sore from the port placement...and everything else that comes along with Chemo.  The nurse accessed her port for her blood draw and to start the Chemo and it wasn't that bad.  What she anticipated was a lot worse.  Since it was her first time they took it really slow and gave her one medication at a time.  They started off with tylenol and benadryl, then an anti-nausea medication.  She was there from about 8:30-3.  The days following Chemo were up and down.  She was nauseated the first few days, and started getting mouth sores, and then a migraine.  All which are side effects of the Chemo.  The headache was probably the worst but the Dr said that they can try to slow down the last medication the next time to hopefully prevent it somewhat.

(She of course found someone to visit with and had her grandkid blanket to keep her warm, I also kept her hydrated with a smoothie and water)

Mom went to the office today to have a blood draw and ended up seeing Dr. C.  He informed her last week when we were there for her Chemo that the pet scan came back and there were some spots in her abdomen that showed positive for lymphoma.  (which he somewhat expected) The sarcoid in her lung also showed and the only way to determine if it is sarcoid or lymphoma is do a lung biopsy which he doesn't want to do.  He said that the next pet scan will show that the other spots will shrink and if the spot on the lung doesn't shrink then we will know for sure it is sarcoid.  If it does shrink then it is lymphoma and we are already treating that so it won't really matter.

Today is when the bomb dropped.  Her bone marrow scan came back and showed trace amounts of lymphoma. (less than 2%) However, we still weren't expecting it and it has to be treated.  So for now he said to plan on 6-8 rounds of Chemo and then radiation.  Since it is in the bone marrow this upgraded her to a Stage 4.  (we didn't want to hear that) He also said her white blood cell count is .09 (very low) if the count doesn't go up she can't have Chemo.  However, this is a normal side effect of Chemo and normally it takes a week and a half for the counts to come back up.  We are still in that window...we won't know until Monday the 27th when she is planned to have her next treatment.

Thanks again for all of your prayers and support.