Julie’s Story

Site created on May 12, 2020

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Newest Update

Journal entry by Julie Theune

More accurately for me - 'Wrists, shoulders, knees, and hips' 

I have been wanting to write another update in the last two months, but it just didn’t happen. Yes, life is busy, but it is much more than that now. The physical pain that daily drags me down is also mentally exhausting. Much of my energy is focused on simply getting through my day - my daily routines that keep my range of motion flexible and now (ta da!) new Physical Therapy exercises. At one point around Eastertime, I felt like I was going through chemo all over again. So let's back up a bit:

I started seeing (another) new primary care doctor, that I really like (I have high standards, so that doesn't happen very often!). When addressing my knee pain, he recommended PT, so here we go with Round #3. This new PCP also did a thorough examination (I mean, that's the ideal situation but we know not everybody's perfect) and found a tiny lymph node in my neck. He is not concerned about it, and my oncologist could not find it at my next appointment a few weeks later. I started PT on May 1st, with the mindset of going 2x/week for 6 weeks. After the first appointment, my treatment plan was to come only 1x/week for 8 weeks. Because of holiday scheduling, I will have a total of 7 appointments through mid-June. Yay! Here's the best part: I was expecting a $100 copay for each of these PT appointments. I work in healthcare insurance, I can read a benefit summary. For some reason, my insurance is covering these appointments 100% - hallelujah! I wouldn't be surprised if they realize their mistake and adjust this months down the road, but I will take it for now!

My PT is going as expected. I am learning a lot of new exercises. In the previous bouts of therapy, I remember getting very frustrated partway through with no/declining progress and that's where I am currently. It was discovered pretty quickly that it is not my knee that's the problem but rather my hips. My knee(s) are compensating for bad hip movements. After my very first nasty AC chemo treatment in June 2020, I remember my left hip giving out and intense pain in my hips during these treatments. That has been tearing away ever since. So I have a lot of work to do. I have also learned that my daily exercise routine may not help with getting rid of joint pain, so I need to go back and evaluate what movements I can do that both keep me fit and keep my joints happy. During therapy, I don't have time to do both exercise and therapy in my morning routine, so my exercise has fallen short. I don't have time anyway in the morning, but now I really struggle to get everything done. 

Finally, in an effort to insert positivity into every post, I had a great oncology follow-up a couple weeks ago. Every six months, I get labwork, see the oncologist, and have a very short 25-minute infusion to treat bone density issues. This past visit, my labwork was my "normal," meaning everything was good except my platelet count that is always low. The infusion doesn't usually affect me, but I was extremely tired and just plain wiped out this time around.  Yet, I felt so encouraged by my doctor visit. He had previously wanted me to consider going on yet a different medication (Tamoxifen) during these 5 years of remission. After a lot of research, I just didn't want to go that route. We had a great discussion. He is fine with this decision, but that also means I need to continue with the infusions. I'd rather have the infusion than the Tamoxifen side effects. Technically, he said I could stop these remission meds any time I wanted since I had both a successful response to chemo as well as surgery, but I know the medical standard is 5 years and I also respect his medical advice.

One more thing to tackle is the return of mild neuropathy in my fingers. Both my pinky fingers have a recessed nailbed and I sometimes have trouble gripping things again. A recent change in a supplement I was taking brought hot flashes and I think I'm going to blame this change  for my fingers, too. After a month of stopping this supplement, the hot flashes are finally gone and I will just wait for my fingernails to hopefully grow out again.

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