MRI follow-up

gripsmith boys in Hilo, 2007

Last Friday I had a follow-up MRI. I’m not sure if I mentioned it before in the beginning but when I was admitted to the hospital the MRI of my brain showed no tumors but all the vessels were abnormally enlarged. No one knew what that meant and it really scared me. One of my oncologists, Dr. Cho, figured it was all the pressure from my tumor in my chest causing the vessels in my brain to become enlarged. He made sure we did a follow-up MRI to double-check. I don’t have the official results but I asked the tech if the vessels looked abnormally enlarged and he said he didn’t notice it. My fingers are crossed that Dr. Cho was right.

Going through the MRI was really emotional for me. Here’s how my day went.

In the morning I thought nothing of this MRI. I got up early. I got dressed and Keoki made breakfast. None of the boys were coming with me because Keoki is working on a music video and needed time to make phone calls and setup crew. I was totally fine with going alone until I walked into the hospital. I started to feel emotional. As I was finding my way to the imaging department I remembered that I never walked to imaging. The only time I’ve been there was by being wheeled by a transporter when I was first diagnosed.

As I walked toward the MRI department I passed the place where I had my first CT that confirmed my Hodgkins disease. All these memories and emotions are flooding back to me and I’m trying my hardest to not let the tears fall. There are slight moments of distractions and I feel like I’m going to be ok and then suddenly I’m ready to cry again. I walk up to check-in for my appointment. It’s the usual procedure. Have a seat and sign these papers. I hand back all my filled out forms and have a seat again to wait for my turn. I have all this time to think about what has happened this past 6 months.

I think during my treatment I wasn’t so emotional because we had this fight to fight and I was fired up. I had my moments but soon after I cried I was back to the happy, positive attitude. Now, that the score is Ashley 1, cancer 0, I’m afraid. I know I have the best chances that I’d be in remission forever but it’s the slight chance that this will come back that scares me. If it does then it could really be a problem. When we were fighting, we had our target and a plan. Right now I feel like I’m Bruce Lee in his movie “Enter the Dragon.” The scene where he’s in the middle of these mirrors and the bad guy can see him but he doesn’t really know where the bad guy is. I keep wondering if I’ll get blind-sided one day. I’m sure everyone feels that way when diagnosed with anything.

I’m sitting there waiting for my turn and the tears are welling up. Right before I think I’m going to just start bawling my name is called. I’m relieved for a moment and then the nurse asks me to follow her so she can start my IV. YIKES! I didn’t realize I needed an IV for my MRI. I sit down on the chair and tell her my usual speech on how I’m a fainter and blah, blah, blah. She tells me she’ll be right back. I glance into the MRI room and the tears just start to fall. I can’t stop them now. I’m trying so hard to stop but the more I try the more I start to sob. The nurse returns with all her medical supplies in hand and sees me crying. She thinks it’s because I’m going to get an IV..lol In between breaths I’m trying to explain to her that it’s all very emotional because the last time I was in there I was admitted in the hospital. Feeling super sorry for me the nurse brings me to a gurney so she can start the IV. It hurts so bad. It’s on top of my hand and I really try to make like it’s nothing but I start to feel super hot and the room is getting white. I don’t pass out but I came super close to it. I’m lying down for about 5 minutes and the MRI tech tells me he’s ready for me. My nurse runs to get me a wheelchair. Oh my gosh, I was so embarrassed. I only had to walk about 20ft. I refused the wheelchair. I really wanted to sit in it but didn’t want to look like a total baby..haha. I get to the MRI machine and don’t remember it being so small. I was wondering if I was going to get claustrophobic in there. Luckily they make you listen to music and there are bright lights and the AC blowing in there. I swear if it weren’t for all of those things I wouldn’t have made it.

He tells me it’s going to be noisy but I thought because I had my earphones on I really wouldn’t hear it. I was so wrong. It is so noisy. Most of the time I couldn’t hear the music. Then they bring you out to inject the dye. He started to inject the dye and it burned so bad. He tried it again and still it was burning. He told me what I didn’t want to hear. “I need to pull this one out and start another IV”. I swear this wasn’t my day. After trying to find a good vein he does it and it hurts but not nearly as bad as the first one. Then he shoots the dye in and I hardly feel anything. Right after he was done doing that I start to feel like I’m going to throw up. He left the room and I’m freaking out. He comes back and I tell him that I don’t feel so good. He lets me sit up and hands me that plastic kidney looking thingy. He gave me a cup of water and it helped the moment pass. I lay back down to continue the 2nd part of my MRI.

I go in and C&K is playing. The song “About you” is on. Does my MRI tech want to mess with my emotions???? Didn’t he see me in the hallway crying my eyeballs out??? Of course I start to think of Keoki and all that we’ve been through. I start to tear but have to remind myself that I’m going to torture myself if I cry and can’t move. Luckily it gets super noisy so I can concentrate on how irritating it is. After a long 20 minutes I’m done and get up to go home. I grab my bag out of the locker, I say “bye” to the receptionist and get my parking validation. I walk past CT again and keep thinking of that day that I was diagnosed.


**************************************************
Update:

I just got a call today from Dr. Fukumoto. My MRI looks absolutely NORMAL…Yay me!!

Let's get a movin'

I said in my previous post that I had extreme fatigue. Now, that I'm past the two weeks after radiation I have all my energy back and more. As many of you know I hate exercise. I fell asleep one time after doing the warm up portion of Jane Fonda's workout tape. Anyway, chemo has made me gain some weight so I'm determined to ge rid of it. I bought a cheap pair of shoes from Wal-mart and pretty much walk everywhere. I went walking and added a little jogging on Saturday. I was so winded that I almost fainted BUT Ashley always wants to faint right???..lol Then my muscles were sore on Sunday and I was so tired that I thought I didn't want to do anything. I ate a whole bunch of "not so good for you" stuff so almost instantly I was putting on my yoga pants and lacing up my shoes. We went to the park. I still can't run a lot but I notice I can run a little more or walk a little more each time. It helps that gas prices are rising so we try to walk to the grocery store or the bank. I feel so much better exercising. I just hope to keep it up. We'll see what happens in couple of months.

Radiation All Pau

Well, I’m all done with my radiation…YAY! Thank goodness because my body wasn’t ready for any more. On my last day of radiation I was so sick that I had to close my eyes and repeat “Logan, Mason, Logan, Mason” in my head to have the strength to make it through my last session. As soon as I was able to get off the table I almost ran to the bathroom to throw up. It felt great and horrible at the same time. I didn’t realize that radiation had a delayed effect. Whatever I was feeling at the end of treatment was basically symptoms from two weeks prior. I knew that even though I was going to be done I had another to weeks of nausea and extreme fatigue to go. It was like all of a sudden the fatigue set in. For almost a week I couldn’t get out of bed. I only had the energy to use the bathroom and eat. Then it was back to bed.

I had my follow-up appointment with my oncologist and was happy to hear that there was no trace on my PET scan of any cancer cells. But he was quick to tell me that it doesn’t mean I’m cancer-free. He said the PET scan could only detect cancer cells at a certain amount. So what does that mean for me? Well, for the next 5 years I will go for repeat scan and test to make sure it doesn’t come back. If after 5 years of not being able to detect any cancers cells then we can say I’m cancer-free. Luckily for me Hodgkins Lymphoma has a 90% chance of being cured after a combination of chemo and radiation. I feel like I’m already cured. I feel great! I feel wiser! I feel happy!

I was at the Kalihi Sunset in park and Ilona Irvine was on stage singing. She has a beautiful voice and the last song she sang was "Thank you Lord" originally by Bob Marley. Wow! As she was singing my tears just started rolling down my face. Every line I felt was just for me.

THANK YOU LORD lyrics

Thank you, Lord, for what you've done for me.
Thank you, Lord, for what you're doing now.
Thank you, Lord, for ev'ry little thing.
Thank you, Lord, for you made me sing.

Say I'm in no competition,
But I made my decision.
You can keep your opinion.
I'm just calling on the wise man's communion.

Thank you, Lord, for what you've done for me.
Thank you, Lord, for what you're doing now.
Thank you, Lord, for ev'ry little thing.
Thank you, Lord, for you made me sing.

Sing along, sing along.

I don't fear their humiliation,
Just to prove my determination.
I don't yield to temptation,
I haven't learn't my lesson in Revelation.

Thank you, Lord, for what you've done for me.
Thank you, Lord, for what you're doing now.
Thank you, Lord, for ev'ry little thing.
Thank you, Lord, for you made me sing.

Sing along, sing along.

Say I'm in no competition
But I made my decision,
Lord, in my simple way.
Comin', comin', comin', comin'.
I love to pray.

Thank you, Lord, for what you've done for me.
Thank you, Lord, for what you're doing now.
Thank you, Lord, for ev'ry little thing.

Finished one job on to the next

As many of you know I also do photography when I'm not working on film productions. I'm actually glad to be getting back into it because it's been too long. I remember I just finished my shoot with the Anderson Family and got put into the hospital. Immediately after that I started working on a couple movies while doing chemo. I just finished one of the hardest projects I've worked on so getting back into photography will be a good change and allow me to relax. I've been trying to work on my website but with two little boys suddenly interested in what you're doing as soon as you jump on the computer or are on the phone it has been tough. I'll let everyone know when tarynreid.com will be up. I have a couple jobs this month which I'm so excited about. Sometimes I wish I could just do photography but the movies keep pulling me back and they have great benefits so I'm torn. I want it all..lol

Radiation

I finished my first week of radiation last week. It was brutal. I got super nauseas and had to stay home from work on Wednesday. Then Keoki told me he was taking the boys camping and I thought I was going to have my first 2 day weekend alone and it would be wonderful. I was wrong. On Saturday I started to feel a bit funny and ended up having the flu. It was really the flu this time not another tumor…just kidding. So I was home alone and super sick. I didn’t have Keoki there to baby me. I was miserable. I was so bad that I had to stay home from work this week on Wednesday and Thursday. I also had to postpone my radiation treatments on Thursday and Friday. We’ll see if I can continue on Monday.

I know I was going on about how alone radiation makes you feel and it still is but I like my radiation techs and although radiation is the most boring treatment because you have to lay there and not move I get to take little naps. That’s how I make the time go faster. They lay me down on this hard slab and yell out numbers and start to pull and tug and my body to position me right. Then I go in for the first part. I get sucked into this hole and slowly my body gets scanned. Then after about 10 minutes I pushed out to wait for my doctor to look at my scan and make necessary adjustment. I get adjusted and then back into the machine I go for my treatment. You know the radiation is going on because the “Tomo” (what my techs call it) machine makes like a horse galloping sound. I hear it coming and going. It took me a few treatments to realize I was slowly moving backward. Then it seems like you hit the end because you feel a slight jerk and the “Tomo” spits you out. Laying on that hard slab for that long makes my whole body hurt. You feel stiff trying to get off of it. I can’t wait for this part to be over. I’m excited to see my oncologist after we’re all done to hopefully have him say “ok..Nothing on your scans”. That is going to be so sweet.

I’m actually very lucky to be using the “Tomo”. My Dr. had mapped out plans and how surrounding organs will get affected by the radiation with the “Tomo” and with traditional radiation. Let’s just say I’d be getting way more radiation to other vital organs resulting in permanent damage than what I’m doing now. Thank goodness my insurance covered this radiation treatment.

Oh and my hair is slowly starting to grow back. I know it’ll be a while before I have long hair again but I can’t wait to be able to make a bun or even a ponytail. I will never complain about my own hair. I’m so over wearing my wig but still do it to avoid looks in public. I’ll go au natural at home or with family though. I no kea wit dem..lol

The call

I got a call from my radiologist oncologist saying that after looking more closely at my PET scan results they did find a small area on my abdomen that is still "diseased". So, I had to go in for another marking session. They redid the marks on my chest and sides and added a few on my tummy.

When the phone rang this past weekend telling me I had to do radiation on my tummy I was very upset. The nurse kept apologizing and really couldn't answer any of the questions I had. My Dr. eventually got on the phone and explained that it is hardly noticeable but it does need to be treated.

Luckily, my sisters are on Spring break so they watched Logan and Mason while Keoki and I went to my appointment. It was good to be with Keoki. It's been a long time since we had a chance to be together. We've been working so much lately that I miss him. Anyway, again I started to feel sad sitting in the waiting room and when they called me I jumped up and walked with the radiologist through the swinging doors. Keoki yelled after us and asked if he could come along but the radiologist explained that he would have to wait outside because no one is allowed in the room when the machines are on. I felt like a child walking with their doctor and their parents telling them it's going to be ok when they know its not. It wasn't that bad actually. I got to talk to the radiologist and they were asking me what my doctor said and explained to me that I'll be using the tomography radiation machine. It's a new type of radiation machine that allows the radiologist to view your scans daily to make necessary adjustments. I guess that eased my mind a little. Keoki worked on a commercial last November for that very same machine. It's weird now I'm going to be using it.

So, I'll go in for my first treatment on Monday. I'll get tattooed and then do my first treatment. In the commercial Keoki worked on for the Queen's Cancer Center's Tomography machine the lady looks calm and relaxed like she was in a spa. I don't think that's the case here but we'll see how it goes.

I've got a PET

Shokudo after my last chemo treatment

It’s been so long since I’ve updated my wellness blog. I completed my 12th and final treatment of chemo on Thurs, 2/28. It was bittersweet. I was so happy to know that I was finishing that part of treatment but sad because that’s what I’ve come to know for the past 12 weeks. I’ve come to realize that I don’t like endings good or bad. I get used to something and am afraid of change. Not knowing what to expect next gives me anxiety. Aside from chemo making me sick and changing my appearance I liked seeing everyone at my doctor’s office every week. I’ve made so many friends. I wonder how other patients that would sit next to me and chat are doing now. I hope they are all getting better and beating their cancers.

Last week I had to do another PET scan to see how big my tumor in my chest is and if I have any other areas in my body with cancer. It also tells my radiologist how to treat me with radiation. My consult was today and I am happy to report that my abdomen is free of cancer. Well, I should say my abdomen does not have cancer cells that are detectable by the scan. After my consultation with my radiologist I was sent in for my marking. It was like I was doing a CT scan and they marked my chest and sides with a sharpie. Next week I’ll get “tattooed” and start my first radiation treatment. I’ll go everyday for three weeks or four. Depends how my tumor responds. I have to admit I did tear when I was done getting marked and changing back into my clothes. It is so different from where I got chemo. When I was getting chemo there was so many people around. If you don’t know me by now I’m totally a people person. During chemo you sit next to someone going through the same thing as you. You chat and even when you don’t talk you know that you are not alone. Everyone sitting in the chair in the chemo room understands what you are going though. When you go to radiation you go to the basement. Right when the door opens it feels cold. The place is nice but I instantly felt the difference. I just felt claustrophobic. I realized that I felt alone. I was getting marked and there was no one there to talk to about how I felt. No one sitting next to me agreeing how nauseas we feel or how chips & salsa is the only thing that tastes good sometimes. I was alone with a huge machine making a loud, weird humming noise. Not even a nurse or tech there to talk to. I was and will be ALONE during my treatments. Not sure if I can handle going everyday for three or four weeks. Then I thought how tiring it would be driving everyday to the hospital. Another scary fact is radiation can actually hurt you more than help you. I mean you could get cancer from radiation. I guess you could get cancer from anything but that freaked me out. I’m sure I’ll be saying how it isn’t that bad once I start but it was a little emotional today.