Category Archives: Hospital Trips

Today was my MRI. You have to understand why I thought it was kind of a big deal: for the past four months, I have had but only one small and local doctor appointment. That’s it. 🙂 Can’t you see how joyous this is?

While I was getting ready, I did some thinking: The past four months of living without having to think of myself all the time has been the most rewarding experience–unlike during chemo when I had at least two appointments every week, plus specific times for taking chemo, and still, log every detail for doctors and research team. Chemo was not helping me. It was controlling me and after much prayer, I decided to end. I know this is not a situation or conclusion that other chemo patients can decide. But this was, and still is, my final decision. I truly am thankful and appreciative of all the care that is put towards my condition and know that it is always available to me when help is needed.

Since then, I cannot deny that I have painfully embraced this fact that my physical body could indeed change drastically, causing me to become fully dependent on others for my needs. It is not easy to comprehend. But isn’t that faith–surrendering fully to God, dependent on Him to meet my every need? I am nothing without His strength; I can’t deny it. Doctors look at my scans and compare what they see evolving inside verses my body’s functions and performance on the outside. The contrast should be labeled as “impossible,” but that is not a word in God’s vocabulary. Possible: I know that it’s true when I get out of bed each morning.

I am a living; As I see now, there is only one direction in which I can continue regardless of MRI scan results–and that is forward.

I came that they may have life and have it abundantly. ~John 10:10b

This morning I got to sleep in without a guilty conscience. I still woke at 9am out of habit, but I just rolled over and went right back to sleep for another hour. I have had things on my list to get done but at the moment, I permitted myself the extra rest. I woke up the second time thinking it was a great morning, because it was.

See, I had no forced reason to get out of bed at 9am. I don’t have to watch the time or record my times in which I take chemo. No more labs, no more excess of orange juice in the refrigerator, no more syringes. In other words: I ended the Sirolimus chemotherapy. Yesterday. Finished–almost five months. Ecclesiastes 3:1 says, “For everything there is a season, and a time for every matter under heaven.” I started chemo in July in blind faith; I am ending it in the same.

This may not make sense to you; it may seem either that I have given up on treatments or that I am turning into a rebel. Neither is the case, but I have come to some decisions about my health, what I am currently doing as far as treatments and appointments and most important–what I want to be doing while I am still able to on my own.

My MRI results showed stable, or “no changes” that they can decipher. This is always a sigh of relief. However, this time it was a tad aggravating–if the results are stable then what on earth is going on that we cannot see? I suggested that they start putting some of the research funds/efforts towards a 3-D MRI machine. Maybe I am too much a Star Wars fan, but I think that would be awesome and more helpful in these situations as then we could see the tumors closer and at different angles.

So if my MRI was stable, then why did I end chemo? It is no surprise to my family (nor my doctor either.) I knew I would be ending chemo at the last appointment on October 22nd; the timing was not right for the discussion as well as I had decided to go the full two months again and wanted the MRI anyway, regardless of the results. I also see now the new lessons of faith that went hand in hand with the physical changes that have occurred since our trip to Wisconsin. These have shaped the path of where I stand now in my decisions and trust in God.

I ended chemo, because there comes a point in time where you ask, “Is this benefitting me?” I know you can’t ask this for all situations but I did in this case. The chemo may or may not have been keeping them tumors stable, but because the side effects in my body have increased at a fast rate, I don’t think tumor size is the issue…more what we cannot see, in which I did not see chemo helping. It actually was starting to frustrate me more than anything. I see this also with my AFO braces. I know–I just blogged my “I am a champion” post, but again, it was pre-Wisconsin days.

I know my body is fading; I have excepted that fact through much tears and a broken spirit. After Wisconsin, I just gave up on life. I saw no hope. As that week ended and I restarted my times of reading the Word, I kept returning to His burning question: “Do you trust me?” Trust. It is what I desire most from my doctors, family and myself that I know my body: I am the one living with the disease, experience the changes, and know when I need different. If I desire that in my own life, how much more God desires it from me: He created my body, died and rose again so my temporary pain would become eternal life, and meets my needs so that I can continue to live. And that is why I made some decisions: I am done dwelling on the past and trying to fix the future. I just want to live to the fullest in the present.

You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore. ~Psalm 16:11

Yesterday I was up before the sun. Actually, my parents were too as the sun did not come out until we had already started down the road towards Cincinnati. It was a lovely morning though. A few times on 42 South, while sipping my coffee, I thought, “This is like a picture off a postcard.” Then we hit the interstate; at least traffic was flowing well and we made it to Children’s Hospital right on time for my day of appointments.

Yesterday marked three months of being on the chemo treatment, Sirolimus. This chemo requires me to have a follow-up appointment every month with my doctor, where I present them with my log of times I take the medicine every day and other recorded health issues I keep track of during the month. I am still doing well on the drug considering all that has happened over this past month. My main doctor asked me my thoughts on it again–if I thought it was benefiting me and if I wanted to continue. Last month’s check-up was easier to confirm better answers as I had MRI scans to help me clarify that tumors were looking stable and it was a benefit to continue on because of that fact (and also two months was not enough time in my mind for a fair trial of the treatment.)

But yesterday I just honestly said, “I don’t know.” There has been more changes over this past month that have been more consistent: the pressure in my lower spine, the increasing weakness/numbness in my hands, more hearing loss in the right ear, worsening lack of bowel movements. Plus the steroids are making my stomach feel heavy and my balance is worsening. By the time I saw my main doctor around 2:30pm (after the whole team throughout the day otherwise), my brain could no longer function in hard questions. All I could think of was how I am not certain what this next MRI in November will show; it is hard not to wonder. I did decide, however, to continue on the chemo as planned until the MRI on November 5th. I will see my doctor soon after and we will go from that point whether or not to continue the Sirolimus.

Yesterday also included seeing the whole “team” of doctors. I do this every six months. I see my main doctor and his small team that I communicate with via email every week for labs and questions; I see four other specialists for different areas plus my social worker. It gets repetitious to have to talk about my problems to every doctor, but they ask different questions and then take what answers I give them, plus their own observations, and discuss together different concerns and possibilities. I cannot tell you what a privilege it is to be a patient with a team such as this! They truly have my best interests at heart and I know this is true for all their patients…just very humbling at how much they circumference and still take time for each individual. 🙂

Usually these “team” doctor visit days start around 8am or so and we usually get out by 3pm (on good days). But because I have had high blood pressure, a bit of last-minute things were added to my schedule before I could leave. And so by 3pm, I was on my way to the radiology department for my ultrasound/x-ray…and in my fatigue and hurried walk, my right foot hits the floor hard, resulting in tripping and flying to the floor. I was fine, but because I had fallen two days earlier, I reopened a wound on my left knee…which gave me a nice mess this morning as I have still been bleeding (thank you blood thinner pills.) Good news is that I think we got that mishap under control, but it added more time to get out of the hospital yesterday. (A big thank you to my interpreter as she was with me the entire day as well.) We finally found ourselves leaving Cincinnati around 6pm. It did not take me long to fall asleep in the backseat.

Although yesterday was a majority of just talking…as the biggest problem of numbness in my hands and feet they can’t do anything for in relation to medicine and I will never regain that lost sensation…I feel that it was a good day (long), but good. Over the next month, I can pretty much guarantee more changes–whether physical or even to the routine agendas like when to get lab work completed. I can only take it but one day at a time, one step at a time.

P.S. I read this verse earlier in the week; reading it from a different translation made a certain phrase stand out. I emphasized it in bold.

I have been crucified with the Anointed One—I am no longer alive—but the Anointed is living in me; and whatever life I have left in this failing body I live by the faithfulness of God’s Son, the One who loves me and gave His body on the cross for me.

Galatians 2:20, The Voice