Iowa City Hospital Stay #1 - Part 1 - Diagnosis - September 18-23
The first big thing after my move was having surgery to put in the nephrostomy tube - after 9 PM Friday evening. This required me to lay on my stomach, not under general anesthesia, but in a "happy place", as one of the team that performed the procedure called it. But for me to lay on my stomach was absolute agony. I could not hold still, so one lady just gave me more "happy juice" and I do not even remember being returned to my room after it was over! Boy, was I thankful for that little jolt of medicine to calm me down! When I woke up at 6 AM Saturday, I could not figure out why my back hurt just a little. And then I remembered the late surgery from the day before.
That means I now have a bag that hangs from my right side, just like a catheter bag, only it catches urine direct from the right kidney instead of the bladder. The tube comes out of my back and hangs down my side to a bag that can attach to my leg with straps just above the knee. I do not like the straps, and with my swollen legs it is very uncomfortable. I will have this until January or whenever I do not need it anymore - to be determined by the doctor in the future - once the chemotherapy has made the lymph nodes smaller so urine can travel the normal route. Not a lot of fun, but better to have two good kidneys. For now, I empty the bag and also empty my bladder the normal way, because my left kidney is functioning normally and empties into my bladder the way it should. I am so very thankful, that they caught both the blood clot and the kidney problem before they ever got to the root cause of what was going on with me.
They did so much just while I was in the ER in less than 24 hours. We saw lots of different doctors throughout the day. But I was now an admitted patient, going through testing to determine what was wrong with me. The doctors all admitted that it was very likely lymphoma, but they were wanting to do more testing to determine 100% for sure. So we just did what they told us to do.
And for a man who had only been in the hospital two days of his entire life (not counting the first days after I was born), when I had a problem with my asthma in 2013, this was going to be a whole new experience.
The first six days in the hospital were a blur of testing activity, labs, and waiting. Three of those days I either fasted all or part of the day for testing or procedures. This made it hard to take blood from me every 4 hours. Every time they had to poke me again, and the good veins were getting harder and harder to find. No one has ever had a hard time getting blood from me. (That's the land Denise lives in - deep veins and difficult blood draws). My arms were very black and blue after the first six days were over, that is for sure.
Here are some tests and procedures that I went through during that time (as I am not a medical person, my explanations may be somewhat lacking, but they are what I understood about each procedure):
Echocardiogram - this is basically an ultrasound of your working heart in 3D. It is a really neat procedure. The lady who did the procedure came in the room and opened the left side of the hospital gown to access my chest around my heart. I told her that she was obviously a "chest lady", which was my attempt at a corny dad joke. She actually laughed, and said that in her 16+ years of doing that job, no one had said anything like that. It made for a fun conversation during that procedure.
CT Scan with contrast - this is to take computer images of my body from my neck to my knees, looking especially at the lymph system. This was tough for me because I had to lay on my back, motionless, for longer than I liked. But they were able to prop up my head some, which made it bearable. This one was definitely a higher tech system than the one I had in Ukraine.
PET Scan - this test looks to find where the cancer cells are active in your body. It requires a complete fast, including no IVs with sugars in them (found that out the hard way, as someone gave me a steroid IV with sugar in it, that would have thrown the test off). So rather than having my scan at 8 AM and taking a shower at 10 AM, I had my scan in the afternoon and got my shower in late evening. This test requires you to sit still for one hour in a room and then lay still in the PET Scan machine (attached to a CT scan for initial mapping) for that scan. You cannot read or use your phone during the "prep" time, because that activity will cause the test to focus on the muscles you used during the hour that the "solution percolated" inside me. So I sat and listened to my choice of music on headphones - Praise & Worship. It was a great hour, but was really hard for me to not move my legs after a while. Then when I moved to the other room for the PET Scan, they played my choice of music over the speaker system. What a great way to help the scan go easier.
MRI - this one was to look at my brain, not to find one, but to see if there was cancer there or not. We did this one in the evening, after I had done the PET Scan in the afternoon. It was VERY difficult for me, because I had to have my head locked in place for about 20 minutes, lying on my back. They did raise my knees, so that helped quite a bit. (Remember, I had been unable to lay on a bed for a couple of weeks already.) By the time I was done, I thought that I was going to bust. But I survived - again, in part to the Praise & Worship music that they played for me. Because of all the fluid build-up, I had a really hard time breathing when not upright. So for the first 5 minutes, it was a very focused battle to relax and just breathe calmly. Thankfully, God's presence came with the very first song - and I was able to relax and endure the 20 minutes of that test. God came through once again to help me when I was weak.
Lymph node biopsy - this is taking some sample tissues from one (or more) lymph nodes. In my case, the lymph nodes are large enough that they were albe to take four samples from just one node. Because one of the main areas where things started was in my right groin, they opted for that location (basically the inside of the hip joint). Normally, they would cut me open and maybe even take the whole lymph node. But because of all the fluid in this area, they decided that this was too risky and it would be difficult for me to heal after such a procedure. (This would have been the plan in Ukraine, I am quite certain. And for that reason alone I am glad that we came to American for treatment.) The doctors decided to do a needle biopsy instead. The big challenge with this was having to lie on my back while they did the procedure. This was very difficult for me again, but they did what they could to make me as comfortable as possible. And God helped me once again, giving me the grace to get through it. The procedure went well and they (fairly) quickly had four good samples so I could be back upright again.
Bone marrow biopsy - this is taking some sample tissue from my bone marrow. This is not the same as a spinal tap (which is quite painful). I was able to lay on my bed, they gave me a numbing shot, and I felt nothing as they took the samples from the bone marrow. However the bump that showed up during the healing process was quite painful!
Over all this time there were lots of blood tests, IV fluids, medications, conversations with doctors, and, through it all - God's ever present peace in our hearts. It all seemed so surreal and yet it was really happening to me.
No hospital experience could be complete without roommates. My first roommate was the best. He was cordial and likeable, and we talked a fair amount, but not too much. The next roommate had an annoying loud voice. But the third one I felt sorry for. He was older and had to have prep for a colonoscopy the next day. Having been through that preparation process several times myself, I knew what was ahead for him (and it did not excite me that I got to be part of this with him). I had no idea what lie ahead for me as I "shared" his experience with him. Because he had trouble making it to the bathroom, he had to have a commode set up next to his bed. Hearing the sounds and smelling the smells was quite unpleasant for me, but he had such a tough time. He just wanted to sleep, could not finish drinking all that "go-lightly" stuff by 4 AM, so he did not get his colonoscopy until about 4 PM (finally), and messed himself several times in the night. It was hard to sleep with all the commotion on the other side of the curtain. Needless to say, I was glad when I learned I was moving and hoped for better roommate (unless I could be alone).
On Tuesday night the 22nd, I was having trouble breathing, which I felt was because of a lot of fluid on my lungs. I called the nurse, and of course, one of the first questions was, "Are you just stressed because they had talked to you about probably having lymphoma?" Definitely NOT! It was because I was having trouble breathing. They did a chest x-ray and learned that my left lung was about half full of fluid and the right lung nearly completely full of fluid. With all that fluid there, that they could not hear it move when I breathed as they listened. After some discussion, they decided to use Lasix (a diuretic) to help take off some fluid - and they stopped the IV fluids that they had ordered to balance out some minerals in my system. After a couple of Lasix treatments, I still was not breathing any better.
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| The final product - over 2 liters of fluid! |
This meant that they called in the pulmonary doctors. They, along with my doctors, decided that I was a good candidate for a procedure to draw fluid from the lungs. As for me, if it meant breathing, I was all for it! They felt that getting a good draw from the right lung would be the best option for me. This truly is one of the easiest and most comfortable procedures that I have experienced. I sat on the side of the bed, and they raised the side table to a height that was comfortable for me to rest my chin on a pillow on top. Behind me, they gave me a numbing shot - and after that felt almost nothing. They use a special pump (after getting the right parts inside me) to manually pump fluid off my lung. They do not use a vacuum because that would be too much power and could hurt the patient.
As the doctor was giving me running commentary on how much fluid had already been removed, after 1 liter I commented that I was already noticing a difference and that it was easier to breathe. We ended up getting just over 2 liters of fluid off the right lung. It was unbelievable. It did take a while for my lung to adjust to breathing air instead of water. This is normal and I coughed a lot and had a hard time taking a deep breath. But I was relieved. They decided that the reward was not worth the risk of doing the left lung at this time, so we called it good with that. Thankfully, this really helped me feel better. Amazing how important it is to simply be able to breathe! We take so much for granted!
On Wednesday, September 23rd the doctors gave me my final diagnosis. In my 6 days in the hospital, the medical staff did far more than we ever thought or imagined possible. It was not easy on me, but it has been worth it. We are now receiving what we came for - a diagnosis with a plan to move forward.
I have lymphoma (specifically - diffuse large B-cell lymphoma). This cancer is aggressive and fast growing - but also responds well to treatment. While it is not possible to know for sure, the doctors think that the cancer probably started growing in mid-July. Tomorrow I start chemotherapy round 1, which will all be inpatient. There will be a total of 6 rounds, three weeks each. This entails: 4-5 days of receiving chemotherapy (starts in afternoon), 7-10 days the chemotherapy kills things in your body, then 7 days to recover and prepare for the next round. I will lose my hair, which will be a new look for me. And not as hard for me as my family expected.
The road will not be easy, but we really believe that God led us specifically to this hospital so that I can be treated for this particular disease here - and at this time. Chemo starts tomorrow already!
The good news in this - no cancer in my brain, bone marrow, or lung fluid - only in the lymph nodes. Praise God!
While I do not like to share these pictures, I think it helps you realize what the cancer had been doing to my body. Overall, I gained weight. From my ribs down I am much larger than normal. And my body has an odd shape that changes every 4-5 days. But in the top part of my body, I lost weight and look just plain scrawny. My arms already had skin just hanging from them. That is one of the most difficult things for me to face. But if I was able to get fit before, I will be able to do it again!
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| You can see my ribs, but my belly is very distended (on my left arm is the PICC line they put in for doing chemotherapy) |
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| My skin is already hanging from my arms |
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| While I have not lost my smile, I am pretty weak |
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