DustyMark's Journey 6 Comments

People often say to me things along the lines of how great I’m doing or something like that, and I reply with something like—-I’m doing what any wife would do. But then I’m reminded by stories I’ve heard and stories people tell me….that not everyone does. I can’t imagine though…running from it. I hear stories of wives (and husbands) that can’t handle it and they leave. It IS hard! You are thrown into a world you know nothing about. Everything changes. How you spend your time and money. Who you spend your time with. Your attention is refocused. Your emotional and physical limits are pushed (and I’ve run 3 marathons….I’d rather run a marathon) to the brink. Your spouse changes. Pain changes people. Stress changes people. I wonder how Mark sees me. How he looks at me (then and now). I KNOW I don’t always make his heart beat out of his chest. But is he tired of me? We always joked (before all this) that we don’t know what life will be like when he retires…when we are forced to spend time together. He told me I’d probably be off doing this or that and he would be left alone and that we would have alot of adjusting to do if we were to be with each other all the time. He has traveled for years and I’m always on the go and so being together all the time was unpredictable. Well. We are together all the time. ALL THE TIME. I think we are doing okay. He always tells me thank you and that he appreciates me. Sometimes my feelings get hurt…I get overwhelmed. I feel like I’m pulled in multiple directions and I can’t juggle everything (I’ve never been super organized). I would like for him to go in-center but at the same time I like caring for him. I want him to be where HE wants to be, where he is most comfortable. Maybe its a control thing but I also feel like this is marriage. This is what I vowed to do (I just didn’t know it) If it were me…I’d want him there for me too. I like making sure he gets good food and helping him with daily tasks….but I also get irritated easily. I guess I’m just a mess. I’ll be in total “get things done” mode but then the next moment..I’ll be really sad. The reality just really hits you sometimes…”how did this happen to us?” I will find photos and just really stare at them. Less than one year ago he was totally different.

Too much?


Yesterday we went to UofM. We arrived slightly late but that didn’t bother me because they always make US wait. Always. X-rays were first of his hip/femur and his scapula. They both are hurting alot more and he wants to “walk til the end” and so we wanted to see if anything showed up that might need to be radiated. Next were labs and then up to an “educational” visit on his new immunotherapy. Basically a nurse (a pharmacist in this case) meets with you to answer questions and go over side affects etc. And it really sounds like the immunotherapy is a nice addition but this chemo pill is what will make changes…if any. Then we waited. For like an hour. Once the NP got in there we were really productive. I often feel like Dr. V is rushed in and out and does not have time for us and really doesn’t like all my questions but I feel like we drive there and it’s our time and they get paid ALOT of money and we deserve the attention. Meredith (the NP-nurse practioner) is really great. Her facial expresssions (what you can see of them), body language and verbiage indicate she really cares and is concerned and wants to help. She was with us for an hour! Mark was suppose to get a shot for bone strength but his calcium is down and so they won’t do it. We have 4 weeks to get it up (please do not suggest drinking milk or I might lose my ever loving mind) so he can get it next time. X-rays weren’t read in time but it was decided he would go back on prednisone at a higher dose and this will help with several things, mostly energy. He is really low in energy and we though his hemo had really dropped but it actually went up (yay hemagenics. We really have worked hard to get more of the supplements in him) and so they think steriods will not only help with that but getting his blood pressure up as well. It might help with pain, itching, and appetite too. I need to go get that as soon as he is done on the machine today. He has a bump on his forehead above his left eyebrow that seems to be getting larger so we are to get an MRI on that here locally and we will return in 4 weeks for a CT scan of abdomen/pelvis and then see the doctor and get the usual labs and immunotherapy and hopefully the bone shot. Once the X-rays are read they will contact us if there is concern but even today he had to take pain meds because that shoulder is really hurting and lifting his arm has become difficult.

We made a pact that he needs to gain 20 pounds (not fluid weight) and I need to lose 15. Not sure how he is going to do that but I’ll keep putting nutritionally dense food in his hands and slap chocolate out of mine! It was a long day (at UofM) but productive. He did get the immunotherapy but we were scheduled for 4:15 and it was 5:30 before they started and 6:30 before we walked out of there. With a gas stop and a food stop (and a rest stop since I started increasing my water!) we got home at 9:30pm. I just unpacked and went to bed. So much for that workout. But no worries…I did it while Mark was on the machine.

Mark is obsessed with food! Despite his loss of weight and his small portions, he is always talking about food. He looks it up on the internet and talks about it all the time. It’s as if he is starving…oh wait! He is. His body knows it needs food and nutrition but when it’s there in front of him…he either doesn’t have an appetite or it tastes bad/weird to him and so he doesn’t want it or much of it. There is also the bloating he has. It makes you not want to eat alot, despite how hungry you might think you are. He looks at food, talks about food and often sends me on runs to get said food. Like Friday night. I was so tired after driving 14 hours..I just wanted to go to bed but he started looking at local restuarants and ordered more food than we could all eat combined. I didn’t even want any! So, at 10pm I went to find the Rice Bowl so I could get Mark his food. Once he had it in front of him…he really couldn’t eat much at all. I remember him getting up in the middle of the night and opening the small fridge and asking me if there was any california roll left. This is stuff we can laugh at but sometimes, in the midst of it, it’s not actually funny.

I’m going to donate blood today! I haven’t done that since I worked post college before I started dating Mark. Let’s do our part. Today at Kent City Baptist church you can click here and sign up. It goes til 7pm but you can donate elsewhere too! The hospitals tell us blood banks are low so we can all do our part. Also…they pay you to donate plasma!!! Just thought I’d tell you that. 2x/week committment for about 1.5 hours (thats with travel time) you can make $400-500 of side cash donating plasma. (Mark doesn’t need plasma (but many others do!!) but hey if you want some side cash…and want to help others…do it!!)

That’s your update!!

Comments 6

  1. No one knows the roller coaster ride your family is on, unless they’ve been there. It’s crazy how many emotions a person cycles through every hour of every day going through this! It’s so utterly exhausting! You two are so lucky to have each other 💜

  2. You ARE doing a great job Dusty! It’s only natural that you would get irritable and sad; you’re and Mark’s life has changed so drastically. I’m so glad you were able to go to Florida! ( but can only imagine how much work you had to do to make it happen). You really are am amazing wife. Please don’t doubt that.
    Thanks for the encouragement to donate blood. Because of you, Gene donated for the first time ever and they were able to get 2 units from him. He said he would do it again. 🙂
    Continuing to pray to our miracle working God for you all. ❤️

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