Archive for the ‘ Tests – Other ’ Category

Time flies

I didn’t realize it had been this long since my last update. I guess time flies when you’re having fun? There have been a few things happening over the last couple weeks.

First, my mother in law got married on June 3rd. It was a great time, and a beautiful ceremony right in their back yard. It was great to see my sister in law, her husband, and their 2 girls. It was also great to meet my father in law’s brother and his wife, and all their friends. Congrats to the newly weds!

My contact lens prescription was changed on the left, and the fit was changed on the right. This Thursday I have my 2 week follow up with this set. The left one feels great and the vision is much clearer. The right is still giving me problems. It gets foggy to the point of having to remove it, clean it, and put it back in, sometimes several times a day. It also seems like the area between my eye and the lens is not always holding saline and dries out. I also think that the prescriotion needs to be stronger on the right lens. Thankfully we still have time for the manufacturer to make changes free of charge.

I had a swallow test scheduled for last Tuesday, esophageal manometry. They were going to send me home with a tube down my throat for 24 hours to measure my acid PH level. They discovered scar tissue in my esophagus during my last endoscopy, and want to see how bad my acid reflux is. I am currently not taking any medication for it, and it doesn’t bother me too much. I was unable to do the manometry test unfortunately. There was a great deal of trouble navigating the tube from the back of my nose into my throat. As soon as the tube touched my throat, I gagged, choked and dry heaved. I also couldn’t breathe. It was horrible. We tried several times but it just wasn’t happening. The manometry test also shows them where to place the tube for the acid test, so they couldn’t do that either. I can’t say I was terribly upset, as I was not looking forward to having a tube in my throat and nose for 24 hours. I have a follow up with my GI doctor in the next couple weeks, so we will have to get a plan B going.

Tuesday and Wednesday I had Photopheresis treatment. It went well. It’s always nice to see the Red Cross nurses that do the treatment. It was the first time I had treatment at the new Fred & Pamela Buffet Cancer Center. It’s absolutely gorgeous with blown glass sculptures and artwork everywhere. Everything is brand new over there, including heated recliners in the treatment area, which made me pass out. For the first time, I slept through treatment…both days :)

I am still having a lot of difficulty with the prednisone side effects. I am retaining fluid, and have swelling in my face, arms, legs and feet. I have a great deal of muscle weakness. I am now on medicine for my bladder issues, which is helping. I am very shaky too. We are slowly reducing the doseage, so it will probably be a few weeks until I am completely done with it.

I fell again this last Friday night coming up the stairs into the house. My right knee gave out & it hurt pretty bad. It’s still sore, but I don’t think I did any permanent damage. I am nervous even walking around the house, the knees feel like they are going to give out at any time. I am being as careful as I can. I’m considering getting a cane that has the rubber feet.

I am slowly gaining weight, but my dietician wants me to gain faster. I was down to 96 pounds, and I am about 106 now. I should be about 115, or 125 with my usual amount of muscle. I have been eating as much as I can, and doing Muscle Milk. I’m also adding peanut butter powder to my cereal, and have switched from almond milk to whole milk in my cereal.

Overall I am doing alright, but I have a long way to go before I can do anything indepently. I’m finally feeling well enough to start walking on my treadmill again. Good thing I have something to hold onto while doing that!

Weight, weak, many updates

I skipped last week’s update because I haven’t been feeling all that great. I have been on prednisone for almost 3 weeks now. I am very shaky and weak, dehydrated, constipated, and I am having bladder issues (back in diapers again). I am also bloated with abdominal pain and I am beginning to have edema (swelling) in my legs and feet. For all these reasons, I very much dislike steroids. However, they have helped my breathing, my joint pain and increased my appetite…but not completely. I am waiting on urinalysis results to see if I have another UTI. I took my first walk on the treadmill in 2 months, and it was much more difficult this time. My joints and muscles are very sore, and walking helped to stretch things out a bit. 10 minutes was all I could handle.

I had my 6 month follow up appointment with my cancer doctor on the 16th. She is very concerned about my weight, and wants to put a feeding tube into my stomach. I weighed 97 pounds at my appointment. Normally I weigh about 125 pounds, but due to loss of muscle, my new normal is about 110 to 115. The salmonella that I had last month really took a toll, and I am feeling much weaker than I did prior. I have been given 6 weeks to increase my weight. If I don’t, my doctor will be pushing hard for a feeding tube. I have been eating as much as possible, which is difficult with my choking issues and general lack of appetite. A friend of ours gave me some Muscle Milk powder that I mix with chocolate milk. I’ve also been adding peanut butter powder to my morning junk food childrens cereals (CoCoa Puffs & Peanut Butter Cap’n Crunch). So far I have gained about 5 pounds, which I am very happy about.

I also had a follow up appointment with my eye doctor on the 17th. The right contact lens doesn’t quite feel right, and my prescription feels like it needs adjusted. He said the fit looks good but discovered that the prescription is definitely off. He wants me to wear the lenses for another 2 weeks before making any adjustments. Fortunately the manufacturer allows 90 days for any such adjustments. Another pair would be made, so I would be able to continue wearing the current lenses while waiting for the new pair. These lenses have been life changing, and I can’t thank my donors enough for funding them. I put them in about an hour after waking up, and every day my eyes are starving for them by that time. They provide instant relief for my dry painful eyes, and the last thing I do before bed is take them out.

I need to get started on my dental work, but I haven’t had the energy to look into it quite yet. A Red Cross nurse that does my Photopheresis treatment recommended a dental discount program that his church referred me to. I will be looking into a second opinion through that.

Yesterday was my birthday, and it was a beautiful day. I got to get out of the house for a bit, run a couple errands with my husband, and we had dinner with friends. My mother in law and future (this weekend!!!) father in law stopped by to bring me some goodies. I felt decent enough to enjoy the day and it was quite nice. I also received 3 donations through my GoFundMe Campaign, which was a nice surprise! Thanks to my awesome donor friends :)

I have another follow up with the eye doctor this Thursday, and in a couple weeks I have my next swallow test and monthly Photopheresis treatment. I also need to work on getting a couple of prescriptions that either aren’t covered by insurance or are too expensive.

Edit: I forgot to mention that I fell a couple days ago. This is the second time I’ve fallen. The first time was last summer, and I hurt my tailbone when it happened. Luckily I did not hurt myself this time, and my husband was home to pick me up off the floor. I basically stepped forward too fast and lunged forward, putting too much weight on my left knee. The knee gave out, and so did my left ankle, which caused me to slowly sink to the floor. It happened in the bathroom, so I had many close objects to put my arms on while I fell onto my butt in a sitting position. Once I am on the floor, I can’t easily get up. The joints in my hands and wrists don’t allow me to push off the floor. It’s scary how weak I am. I do not trust my legs at all, and would not be safe anywhere without the support of someone with me. It’s a good thing that my husband has the ability to be around most of the time. I am extremely thankful for this!

Still sick

I wanted to say thanks again for all the help with my fundraising. I really appreciate the donations & attention the campaign is getting.

The last week has been pretty rough. I’m still getting low grade fevers most nights, and I am very fatigued. I’ve spent most of the last week in bed, and spent a lot of time at the hospital. I’ve lost the little bit of strength that I was starting to gain.

I had an Endoscopy on Monday. Everything looked normal, unfortunately. I was hoping that the hourglass section of my throat (that was discovered during a swallow test) could be stretched. The surgeon’s guess is that it’s a muscular issue. Next I need to have a test done which measures the muscle pressure when I swallow. They will need to stick a tube up my nose and down into my stomach. I am not looking forward to it, but I am sick of choking. I had Photopheresis treatment Tuesday and Wednesday, and I now begin getting those treatments once each month (still 2 days per treatment).

Dr Appt / X-Ray

Too bad I couldn’t see the doctor on one of the days that I already have to be at the hospital. It’s about a 10 mile drive (one way), and the days that I get treatment my husband has to make 2 trips to the hospital…not to mention it’s very exhausting leaving the house, especially in the winter when your laundry isn’t getting done!

Update:

This appointment went well. We discussed the importance of getting dental work done prior to transplant. My case manager contacted my dentist, who confirmed that all work could be done in one day with minimal notice if my blood work gets high enough.

Her main concern was my smoking. They wanted me to stop all smoking immediately (concern of lung infection), which is pretty tough to do in some of those darkest days. It’s my one crutch and I’m having a really hard time with it. As most cancer patients who smoke weed will tell you…it helps immensely. No problem quitting, but then give me something that will help with as many side effects as it does, and I’m happy to not smoke. They prescribed me Marinol, which just puts me to sleep.

During the exam, my abdomen was so bloated that the doctor couldn’t even feel what she needed to. When I was finished with my appointment, I went down to have an X-Ray taken of my abdomen. The X-Ray basically showed that I was full of shit. I basically had a hard trail of poo pretty far up, and the ninja poo that I was having was just sneaking around that trail. Lovely stuff, feels great. I began taking Colace stool softeners 2 to 4 times a day, and Miralax 1 to 2 times a day…and that’s when I started wearing diapers!

The doctor also discussed timing for the next biopsy. She wanted to give my body a bit longer to recover. I was terrified of what the biopsy results might show. It really sucks waiting and wondering what’s going on inside your body.

It was around this time I started taking Oxycontin every 12 hours. I wasn’t feeling well at all, which my blood work shows. Unlike the other pain pills I’ve taken, this is time released, and must be taken on schedule. It doesn’t make me messed up like the other pain pills, but it makes me tired sometimes to the point where I will pass out eating, with food in my mouth…dangerous.

CBC / Platelets

CBC:

White blood cells:  0.1

Hemoglobin:  7.0

Platelets:  1

Absolute Neutrophil Count (ANC):  Not checked if white blood cells are less than 1.0.

 

Received 1 unit of platelets also submitted a fecal sample to test for C-Diff, which is a nasty infection causing massive collidus. The test was negative. Let’s just say my poo was not as it normally was, and the ninja poo were creeping up on me (ninja poo: silent, undetected poo until visual surprise).

 

Hospital Admission / CBC

After severe digestive/chest pain for about 24 hours, I was seen at UNMC’s Cancer Treatment Center and was told not to go to the ER.  After running a series of tests (EKG, chest x-ray, blood work) it was determined that my heart is healthy.  However, we were unable to determine the cause of the pain.  Our suspicions are either muscular or esophagus issues.  I was admitted because the doctors weren’t comfortable with me going home until my pain was under control at the very least. I also vomited three times within that 24 hours which was a concern.  I received one unit of platelets at UNMC’s cancer center before being admitted.

I was admitted into a room on the 7th floor, which also happens to be UNMC’s transplant floor.  This is the same place I will go during transplant.  I was put on close observation and a very healthy dose of pain meds.  I required some pretty heavy duty pain meds to get things under control.  At this point, if I’m not fully medicated, I cannot eat or drink.  It was nice to spend time in one of the rooms on the transplant floor.  I got very good sleep in a comfortable bed.

I spent 2 nights in the hospital, and was discharged on Tuesday. I fugured out what the pain was – I have some sort of sore down in my esophagus. It’s either from pills scraping my throat, or from eating food that is not soft enough. At times, even swallowing my saliva caused me major pain. After using Magic Mouthwash (which is swished and swallowed before meals, and inclused numbing ingredients), I was finally able to eat and drink carefully with no pain.

 

A CBC was also done on the 8th:

White blood cells: 0.1

Hemoglobin: 7.0

Platelets: 0

ANC (Absolute Neutrophil Count): Not checked if white blood cells are less than 1.0.

 

Chemo – round 8 / CBC / Muga Scan / Platelets

White blood cells: 0.9

Hemoglobin: 9.0

Platelets: 9 (9 after getting platelets)

Absolute Neutrophil Count (ANC): 0.6

 

Chemo day 1 of 5

 

This round of chemo kicked my ass like no other. I was given 3 chemo drugs, one of which was actually a very pretty blue color, quite similar to my current hair color. Too bad it’s known as being one of the worst ones for nausea. All food lost its flavor, and I was very sick to my stomach all week. Needless to say I didn’t eat much, and lost about 5 lbs. I also slept a lot. Instead of getting 2 anti-nausea meds and steroids before chemo, I was only given 1 anti-nausea med. I think this had a lot to do with it wreaking havoc on my digestive system. For the first time in 8 rounds of chemo, the chemo itself actually made me vomit (3 times), which as I have mentioned I’m pretty phobic about. Not a fun week, but thanks to the ability to sleep like no other, I managed to get through it.

I also had a Muga Scan done on my heart to be sure it’s healthy enough for more chemo. I was told that my heart is good, but never received the actual results of the test.

 

Chemo drugs:

Mitoxantrone 16 mg in sodium chloride 0.9% chemo infusion (once per day for 5 days)

Etoposide 165 mg in Dextrose 5% DEHP Free (once per day for 5 days)

Cytarabine 1,640 mg in sodium chloride 0.9% chemo infusion (once per day for 5 days)

 

Ultrasound

The ultrasound went fine. I asked if it was able to check my intestines and/or colon, and the girl confirmed it did not. I was sure that the swelling was in my lower digestive system, so this test ended up being completely useless. As expected, a nurse from the Cancer Center called the same day to confirm everything looked good on the ultrasound.

One of the women in the Diagnostic Center brought me an aloe plant for my burn. The ladies there are so awesome. They see me often for check-in and blood draws.

I’d stayed up all night Monday after sleeping at the hospital all day. I went home after the ultrasound and slept for awhile. Later Tuesday night, I started to feel sick to my stomach, and I got a massive headache. Yay, low platelet fun time. My gums had started bleeding where my tooth broke. The gums are sore and swollen. I knew my platelets had hit 0, because I was spitting blood all day. I read that sitting forward helps, and not to lean back. That’s rough when you’re trying to sleep. I took a couple of Ibuprofen (which you’re not supposed to take with low platelets, as it thins the blood), which helped a little, but the pain was excruciating. My husband made me a couple pieces of toast, and I could only eat one. My entire mouth was so sore that even soft toast was too much…not to mention the blood blisters in my throat from eating soft waffles earlier in the day. My head feels very fuzzy when I get like this, and I have a whooshing feel/sound in my ears. It’s hard to describe. Through all this, the thing I most dread is vomiting. I told my husband that there was no way I could drive, and that he may need to drop me off for my platelets in the morning. Thankfully I was able to eventually fall asleep around 3 am. Otherwise I was heading to the ER for a scan of my head (to check for internal bleeding) and some serious IV pain/anti-nausea meds. This is as bad as it gets for me. This is the 7th time, and I feel much better knowing what to expect.