July 15th — Felt so good when I woke up this morning. I really thought I was finally going to have a good day after being so weak the last few days. Got up and went to the bathroom and realized I didn’t feel as good as I thought! I laid back down for a while knowing that I would like to try to at least get to Sacrament meeting today so I would need to shower soon.
I finally got out of bed about 9am and came to sit in my reclining chair. Had a green smoothie and thought I was feeling better. I made it through taking a shower and ended up back in bed as soon as I was through. At that point…. I realized that church was out of the question today.
I decided it was finally time to let the Ward know of my situation. I had spoken to the Bishop two weeks before and wasn’t really sure I was ready to share it with everyone at that point….. but now I felt it was time. The fact that it was all over Facebook made me think I should at least be willing to share it with my neighbors! Since I was unable to go to church today…. I asked my husband to speak with the Bishop before Sacrament meeting and let him know that I would appreciate the prayers and support from the ward.
My husband was later coming home from Sacrament meeting than I expected. I figured he would get a few people stopping him, but I guess one couple in particular talked to him for quite a while. By the time he came home…. I was feeling a little better. I had just finally dried and flat ironed my hair.
It was another kind of stressful day because I still had not decided wether I was doing chemo or not. I kept going back and forth, being concerned about the weakness I’d been having…. but starting to feel a little better….. which route should I take? I knew that I was going to need to talk to Dr. Carpenter before I decided. Plus I had another energy session scheduled for tomorrow. I didn’t want to make any decisions till I had done both of those.
Being concerned that I wasn’t eating enough, (in their opinion) ….my daughter and her boyfriend insisted on bringing us some dinner that night. The bought some Halibut and Sword fish and grilled it on the grill. Along with a nice Caesar’s Salad, and some grilled Asparagus…. it was a nice meal. I enjoyed both kinds of fish. I’ve never had Sword fish before so it was a nice change. It was so kind to them to bring it to us! I’ve decided that I may need to add more protein to my diet through the form of fish and maybe some chicken on occasion. I have felt a little better with both the Salmon I had yesterday and the fish today. Nate was able to join us for dinner too.
It was a nice ending to the day. Still going to bed unsure of a choice, but knowing that I really need to make that decision tomorrow!
As an aside…. I haven’t had any Pawpaw since yesterday morning and only one dose of ASEA today. I wasn’t sure if they were affecting how I was feeling. Need to talk to Dr. Carpenter about that tomorrow.
July 16th — Started the day feeling pretty good. I woke up kind of early but still lay in bed for a while. I wanted to take a walk. It was the first day I felt like I had enough energy to do anything like that since last week. I sat at the computer for a while catching up on email and stuff first and we thought maybe I should have something to eat before we tried walking. So John gave me some green smoothie. After drinking it and sitting there for a while, I started to feel a little queasy. I thought it best to lie down for a while before we attempted to take a walk. So after about an hour, we decided to give it a try again.
I did pretty well. We made it across the river and headed south. My goal was to make it to the bridge that goes under 12600 So. The problem with going that way is that at that point, it’s quicker to get back to our condo by hiking up to 12600 and go straight west and cut through the trees to take us back to our condo subdivision. It’s hard to talk myself into just turning around at that point and coming back the way we came. So John helped me up the hill. Going through the trees is a little uphill climb too. I knew it might be hard…. but we gave it a go. I had to stop and rest for a minute after the climbing. Not for long…. just 30 seconds or so to get my breath. We were almost to our condo when our neighbors came walking up behind us. They stopped to chat for a minute. They are new to the neighborhood so I don’t know them well…. but she had heard the news in church and stopped to ask how I was doing.
I found out that she had been through chemo treatments for breast cancer and was a survivor. She even had the same doctor! She was very encouraging and offered to help with anything we might need (as have SO many others!) It was a nice chat…. but I was ready to go in the house! I was tired from the walk!
Spent the rest of the morning taking it easy. Lying on the couch, catching up on FB, etc… My energy healing session was scheduled for 2 pm. John and I discussed the fact that there were a few things we needed to pick up from Costco. One of the main things was spinach. We use a lot of spinach in our smoothies. He wanted to know if I felt up to going to Costco. It was too close to my scheduled time for my session, so I opted not to go. He finally left to go himself just before 2pm.
My session started about 2:15, again by phone. I love this woman! I can’t even describe what the session was like. We spent an hour and 1/2 on the phone. She is amazing! She found things in my body that needed work of releasing trapped emotions. We spent time talking about things I needed to be doing to make some changes in my life. The most profound thing we discussed was the fact that I needed a clear vision of where I wanted my life to be 10 years from now. She felt that that was a lot of my problem in my sickness. That I need to find a clear purpose of who I am and what I can contribute to others that will make me feel fulfilled. I have been struggling with that issue for months now! Is it crazy to think that that is part of what brought this all on? Wow….. LOVED every minute of my time with her. I felt SO energized when we were done. I just don’t know how to explain it. It was like a big relief…. like a place inside of me that was full of ‘stuff’ had been removed and I could feel the space that was being made to exist as me! You have to experience it to even know what I’m talking about.
John came home from Costco just as I was ending the session. He come home with LOTS of veggies and fruit and a Jack LaLane Juicer! We had talked briefly about getting one. Even though we have a wonderful Blendtec blender that we use for our smoothies…. we had read so much about how juicing is good for you too. Especially carrot juice. So he bought a big bag of carrots too! One more appliance I need to make room for!!!!
I finally had a chance to talk to Dr. Carpenter just before 5 pm on Monday. John had just left to go to his ballgames for the evening, so he wasn’t here when I got the call. I spent about 20 minutes on the phone talking to him. I told him my concerns about the weakness issues I’d had over the weekend. He felt very strongly that it had nothing to do with any of the supplements I had been on, except that we wondered if I had been giving my body maybe a little too much ASEA than it could handle right now. Since it works so well…. he thought maybe my body was trying so hard to heal that it was fatigued. We agreed that I should cut back to 8 oz a day for a few days and then start working my way back up to the 16 oz over the week or two. However…. he told me to get back on the Pawpaw at it’s normal dosage.
I told him my concern about the fact that I had been upgraded to a Stage 4 Hodgkins with the PET scan showing that I had bone evolvement. He said that while ASEA works wonderfully quick on soft tissue in the body, that it takes much longer to see results in hard tissue. Even though he is not a fan of chemo and felt that I could kick this without…. the fact that the bone evolvement is in my spine made him say that perhaps I may want to consider chemo treatments just to get that jumpstart in the bones. That was all I needed to hear.
I had been fighting this treatment for so long….. still apprehensive about it but so grateful for a Naturopathic doctor that was wise enough to say maybe I should.
So…. after my conversation with him AND the energy healing session….. I had such a calm feeling of knowing that the chemo was going to be alright. I would survive and be fine!
I finally got in the shower since I had rehearsal that night. I was feeling pretty darn good. Between those two phone calls, I felt energized and knew I would make it through rehearsal just fine. By the time I got there, I attempted to call John to see if I could catch him in-between games. I wanted him to be the first to know what I had decided. No such luck in reaching him. I attempted several times, but no luck. Finally I decided to start texting family members…. since they were all concerned and wanted to know what my decision was since I was scheduled to start chemo the following morning. They knew that I hadn’t decided and still had the option of turning it down, even though I was scheduled.
So I started with my own children. I told them they could breath a sigh of relief…. their mother had decided to do chemo. I told them I was at peace with the decision. Then I sent the text to my siblings. Then to my close friends. So everyone knew now but my own husband!!! He’s not very good at this phone thing. He’s so used to being with me and everyone calling and texting my phone that he forgets he has one sometimes! He claims he didn’t see texts or messages from me. I still think he doesn’t know how to use his phone very well. 🙂 I was getting text messages right and left from family members at rehearsal after that. Everyone telling me how relieved they were that that was what I had chosen. I know they only had my best interests at heart…. but no one knows how truly hard this was for me…. except John.
I had asked my son, Nate to come over after his ballgame that night to help John give me a blessing. Even though I felt calm and good about the decision….. I still wanted a blessing! It was almost 11pm before he got here. John had just barely pulled up ahead of him. He still hadn’t seen my messages and had never tried to call me, so he was the last to know! That’s not how it should work… but it did! If I had waited to tell him first….I would have been texting other people at 11pm!!
After they gave me a blessing, we still sat and talked for a while. I think it was midnight before Nate left. John and I headed to bed….but I wanted to settle my brain down and not have what was about to happen tomorrow going through my head all night, so I lay in bed and read a couple of chapters of Little Women to help me sleep with better thoughts in my head. I’m enjoying reading the novel. I’ve never read it before. I think it’s good to know where the story line comes from for the show!
July 17th — Well.. today is the day. I lay in bed for a while, not wanting to rush to get up, knowing what was coming. I was so grateful that I had found that blog online from the lady that had experienced what I was about to go through. It was very detailed about exactly just want would happen…. it actually helped me a lot to not be as nervous and apprehensive. Her blog is called “Running From Dr. Hodgkins”. It was very helpful to me. Many of the comments scared me a little…. but I still found the site very helpful.
After I got up and started to get ready…. I was feeling a little nervous. Not what I had hoped for since I felt the decision had been such a calm relief. I had some green smoothie and packed some soaked walnuts to take with me. Unfortunately, I had refused to look through the packet they had given me at the Chemo class they sent me too. I was pretty dead set on not getting chemo at the time and didn’t want anything to do with it. The only thing I had looked at were the papers on the kinds of medicines I would be receiving and looking at the awful possible side effects. That was enough to turn me off right there! Anyway…. since I hadn’t looked through the packet….. I wasn’t as prepared as I should have been for knowing I should be eating.
I got a phone call from a dear friend. She knew I was headed to the doctor soon and wanted to talk. Not only about me….but about what was going on in her family. She was freaking out about her daughter. She had just met a guy online and was traveling there to meet him. Lyn was freaking out. I won’t go into all the details here… but lets just say we had a good talk and she made me laugh a lot. I think it was good for me! Helped to take my mind off of it again.
We finally got into meet with the Doctor about 10 am. My appointment was at 9:30, but it took a while for him to get to me. He does take his time with his patients, including me…. so I can’t complain too much having to wait my turn! We talked about the results of the Bone Marrow biopsy. This was the first chance we’d had to discuss it with him since he’d been out of town the week before. He confirmed that it was the same kind of Hodgkins in the bones. I guess that was part of the worry, that perhaps it had turned into something else in the bones.
We discussed my apprehensions, and he knew that I had not fully committed to treatment, so he was hoping I was going to say yes. I think he was very relieved that I had decided to proceed. He felt confident that it was in my best interest. But really….. I know he wasn’t pressuring me. I’m really impressed with him. He does care about what his patients think.
After our visit, he lead me back to the treatment area and we found a seat for us. I got a nice big recliner to sit in and John just had a chair! Bummer….. we were there a LONG time! I was surprised at how calm I really did feel!
They finally came in to get me started around 11am. I told John I figured it would be that late with all that was going on. First she put an IV in my hand and took some blood samples. They have to test all of your levels before they can administer the chemo. They will do that at each visit since they expect your blood counts to be lower after treatment. It took a while for the lab results to come back, but when they did, she started me on some anti- nausea medicine. Of course they give that first to help relieve the nausea that is expected from treatment.
After the all clear…. treatment began. I’m receiving what they call the ABVD cocktail. Meaning I get 4 different types of chemo medsgiven to me one at a time. The first was what the blogger referred to as the ‘Red Devil”. It’s the only 1 of the 4 that has a color to it. The blogger had highly recommend that you chew on ice chips during this one since one of it’s side effects can be mouth sores. I mentioned that to the nurse and she said I was right. It’s just that sometimes they forget to suggest it! (Glad I read that blog!) I guess keeping the mouth cold during that time helps a lot. I was totally up for it. Mouth sores don’t sound fun! So I chewed on ice chips the whole time she gave it to me plus she suggested to keep chewing for about 15 min after that one had been given. The one didn’t take too long to administer. Only about 10 min. The next one didn’t take long either. It was the third one they gave that got to me a little and felt like it was burning going in. And unfortunately, that one take about an hour! I didn’t enjoy that one much. It made me a little nauseous. Again…. I will be better prepared next time with some food there. Plus my appointments are later in the day so I can eat some lunch before I come in.
The last drug they had to do a little allergy pretest on. She only gave me about 2 cc to test and waited about 30 min to see if I reacted. Since I didn’t (I guess reactions are very unusual… but they still have to test for it.) she proceeded to give me the last of the four drugs. I could name them all if I wanted to look them up…. but I don’t! If you’re curious, I’m sure you could do a google search for ABVD and find out. Or better yet…go to the blog: Running from Dr. Hodgkins.
The nausea from the third drug pretty much quit as soon as the drug quit going into me! Thankfully! The nurse had gone over the doctors orders and wondered about another nausea medicine he had mentioned but wasn’t on the order. So she went back to talk to him and he decided that with every thing I have going on, that maybe they should give it to me. It’s a fairly strong one that stays in your system for a couple of days. So then we had to wait for that to come up from the pharmacy so they could give it to me. Once there… it took another 15 min or so to administer.
We finally finished and left at about 3:30pm Yep…. 6 hours! We had to stop at the check out desk to schedule a time for me to have what they call a port put in my chest area. The nurse had discussed with me that with the kinds of meds I was receiving that it would be a good idea. I guess these meds can really cause havoc on your veins and ruin them, so the port is a better way to access my blood stream without having to be poked with an IV every time I come in. Is is something I look forward to? NO! But it sounds better than ruining my veins! I checked it out on that same blog site and she recommended it too.
So I am scheduled for another surgery next week! Yikes! I’m hoping to find a good place to put it where it won’t show under most of my clothing. It doesn’t sound like the kind of thing I want to have to deal with everyday for the next 6 months…. but it is what it is I guess!
We had to stop at the pharmacy before going home for all kinds of prescriptions so it was about 4:30 before we got home. Now bear in mind…. I hadn’t had anything to eat other than a green smoothie that morning and a few soaked walnuts. Not a good plan. By the time I got home I was tired and lay down on the couch. I was getting a headache. I wondered if it was from that last nausea medicine they gave me. When I looked it up online, headache was one of the side effects. I had John make me apiece of toast, but that was all I had.
My daughter and her boyfriend insisted on bringing dinner over again! Even though it was HIS birthday today and Mandy’s tomorrow…. they wanted to bring ME dinner! This time it was crab legs! Yes…. he is extravagant! Boy oh boy were they good! They cooked them up right here and we had Asparagus and salad again with it. I wasn’t sure I felt up to sitting at the table when dinner was ready, so I had them bring it to me while I lay on the couch. The more I ate…. the better I felt. I started just eating the crab because I wasn’t sure how anything would settle. I hadn’t been feeling real great for about an hour or so before they came, so I was a little worried. But thankfully it all tasted good ( I’ve heard you can get a metal taste in your mouth and nothing tastes good…) and I really did feel much better! I ate everything on my plate plus a few more crab legs. It was a good thing. In fact, after a while, I felt good enough to sit at the table and help them finish the crab off! I even ate all the Asparagus that didn’t get eaten. I guess I needed it!
After dinner, they visited for a while and finally decided to leave. They had talked about going to a movie for his birthday, but went home instead! It really was a kind gesture of them to bring and make dinner. I was very grateful!
After catching up a little on the computer…. it was time for bed! And I went there gratefully!
July 18th — Today is Mandy’s birthday. I woke up feeling very good. John went to serve in the temple, so I was awake very early. I couldn’t go back to sleep after he left. I lay in bed thinking about things, about how good I felt and I had an overwhelming feeling of well being come over me. An assurance that I was going to be fine and live a long life! I felt a sense of real gratitude! I started thinking about my conversations with both my energy healing friend and Dr. Carpenter. I forgot to mention that in my conversation with Dr. Carpenter he told me that in all the years he’s been working with cancer patients, he always sees an underlying emotional problem that is really making them sick. Most of the time they feel lost…. like they have no purpose or a reason to really live! Good grief! That’s what I’d been hearing from my energy friend! Perhaps I was being told something in a big way!
I lay there in bed thinking about it and starting feeling like I needed to blog about it. I mean a real post this time. The kind I was doing everyday last year! I felt inspired to write one. It’s called “The Journey to be ‘Me’. You can click on that link if you haven’t read it and would like to.
The morning was spent in bed blogging and posting things on Facebook about many things… including birthday wishes to my beautiful daughter. I even reposted a link to the blog post I made about her last year on her birthday.
I was feeling so surprisingly well that I wanted to take her to lunch for her birthday. I wasn’t sure how I would be feeling, so I didn’t dare make those plans the day before. I sent her a text and asked if we could do that when Dad got home from the temple. She agreed. I finally got in the shower about 11am. John was home by then. He had snuck out early. Since he wasn’t needed on the session today, he went ahead and came home.
We decided on the “Blue Lemon” for lunch. Nate was available to join us, so it was the four of us. Jon (Jr.) is in California right now for some training for work so he obviously couldn’t come. I really enjoyed the meal. I had their special, which was salmon (More fish!!) with a corn ratatouille and a salad with balsamic dressing. It was delicious! We each had something different and I believe everyone enjoyed it immensely! I know I did! Just being with my family makes me happy anyway!
Still feeling pretty good, we decide to go over into Whole Foods since it was right there. We spent about $50 there. Mostly on coconut items! I finally found a whole coconut to try! I have always loved fresh coconut meat…. but it’s hard to come by them here in Utah! They also had some coconut flour and unsweetened shredded coconut. I also picked up something called coconut manna. I hoping it’s the same thing as coconut cream! I have so many recipes saved on Pinterest that use these items! I was glad to find them!
Then we ran up to Corporate to pick up our order of ASEA. We were out of pouches and needed to get some. While there…. we met a lady from AZ that was in town and had run out of ASEA and was going crazy without it! Her daughter thought she was nuts that she couldn’t last s few days without it! Once you get on the stuff and know what it is doing for you….. you really don’t want to be without it! She only wanted a bottle, but they only sell it by the case there, so we sold her one bottle from the case we had. We found out while talking to her, that her husband had just gotten over a form of lymphoma! She told us about the massive tumor he had that they couldn’t remove because of all the blood vessels tied to his stomach. His only option was chemo or worse… to die. Luckily, they had been introduced to ASEA just before that so he was able to take it during his chemo too. They felt it was very helpful for him. I guess he’s very holistic too and did not want the chemo either! But, he didn’t have a choice if he wanted to live. It was an interesting chat.
One more stop before home…. We stopped at Sam’s club to pick up a few items that I like better than the ones at Costco. I know! Can you believe it? By this time I was getting a little tired, so I opted for the electric cart. Feels kind of funny doing that….. but I knew I would be better off. Especially since I had worn high heels with my outfit! And they had plenty available so I didn’t feel too guilty taking one!
Then we came home. I was tired! I lay on the couch catching up on the computer again but feel asleep with it on my lap after a while. I really was exhausted! I was so grateful that I had been able to do all those things and remain feeling good the whole time! But I was tired.
It was a good test day for me. If I can remain feeling this good the day after treatments, maybe I won’t need to stop treatments during the run of the show. We’ll see how the next one goes. What I did learn though is that I need to conserve my energy for rehearsals, so maybe not so much activity during the day after!
John had a Home Teaching appointment at 7pm and we didn’t get dinner done before he left. I finally got up and put on a couple of veggie burgers to cook. He got home just as they were finishing. Good timing on my part! So we had a veggie burger sandwich. It was pretty good. I was glad, because he didn’t pick up the veggie burgers I had wanted him too. I usually buy the ones that are in fresh and in the refrigerator section by the cheeses at Costco… but I guess he didn’t hear that part and found some frozen ones. Luckily they were a different brand than the last frozen ones we bought there. I didn’t like those at all! This is the Morning Star brand which is the same brand of Black Bean burgers we buy. So I was excited to try them. They are good!
I’ve just been sitting here on my computer all night getting caught up with this post! I can’t let too many days go by before I forget details!! Since it’s after 1am now….. I’m headed for bed! It’s been a good day. Truly! For the day after my first treatment…. I am very pleased!