Archive for the ‘ Dr. Appointments ’ Category

What’s next? We have options…

I had an important appointment with my cancer doctor today.

Short version: We will begin another longer round (10 days) of the same chemo drug as soon as possible, then play the waiting game again. We may use another drug with the 3rd round of chemo if needed. My doctor will work hard to make sure I get oxygen, as breathing was a major problem during this last round of chemo.

Long version:

I have 2 new gene mutations:

The NRAS gene, found in about 10& of patients with my type of cancer. There may be some clinical trials, but most of the time the trials are for patients with an organ cancer, not blood cancer.

The SMC3 gene, found in about 1% of patients with my type of cancer. This gene has an antibody therapy called Mylotarg that can be used either alone or with chemo. We plan on possibly using it with round 3 of chemo. Normally there are 2 doses, given on day 1 and 5. I will need to be in the hospital for a couple days with each dose in case I have an allergic reaction.

The chemo pill I started last Friday is to hopefully bring down my white cell count, which is high (this is not good and is directly associated with the disease). It will bring down my other blood counts as well, like with any chemo drug.

Once my blood counts stabilize, we will plan on doing 10 days instead of the previous 5 days of the same chemo drug. This could be any day.

My doctor confirmed that unless we can get this under control, we aren’t talking about months that I have left.

My doctor is going to do whatever possible to get me on oxygen. My body’s biggest problem with the chemo was that I could barely breathe for a few days. I feel like I could tolerate a harsher chemo drug if I could breathe better. I have an appointment tomorrow to do a walking test. I will have to use an assisted device (rollator) for the test. Hopefully I can walk fast enough for my lungs to show how terrible they can be. I also have an appointment tomorrow with Infectious Disease to look at my legs. I will also get more bloodwork tomorrow, and I have my first appointment with my therapist since my relapse…it will be a fun talk.

I plan on getting another update out tomorrow on bloodwork & the walking test. Hopefully no additional drama is thrown my way in the meantime.

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!

More upcoming tests, general updates

First, thanks again to everyone who has helped with my fundraiser. Day to day life has been a bit more manageable, but I still have a ways to go on my dental treatment.

The last week has been pretty busy. I had my Photopheresis treatment on Wednesday and Thursday, and I had an appointment with a new doctor on Friday for my choking issues.

Photopheresis went well, and the bloodwork that was done prior looks good. I am low on a few things, which is a result of poor diet and lack of muscle.

My Fiday appointment was basically a consultation. I had an endoscopy a few weeks ago, and a biopsy was taken of some scar tissue in my esophagus. I have 2 tests scheduled for June. One is a esophageal manometry. The tube will be left in for 24 hours to also test my acid levels. I am not looking forward to all this, but I am sick of choking on everything!

My contact lenses are working out quite well. Although I think some adjustments need done, overall I am very happy. It’s amazing to be able to go outside without having to close my eyes and rely on drops every few minutes. I no longer feel like I have a foreign body on my eyes, and they are much less painful.

I have been put on steroids for the next couple weeks. Although I hate steroids, they do help with a lot of things. My breathing has been better, and I have a lot of energy. I will take advantage of this to rebuild some strength.

This week I have my 6 month follow up with my cancer doctor, and I have an appointment to have my contact lenses checked.

Goodbye Salmonella, Hello Sclera Lenses – and cats

My fevers finally stopped a couple nights ago. I can now handle being awake after 6:00 pm without body aches. The abdoninal pain has stopped, but it will probably be awhile before things are back to normal. Things are quite manageable though when it comes to the digestive system. Now I just have to eat more and put some weight back on, which is difficult when you choke on everything.

My pulmonary doctor referred me to an allergist, and I had my first appointment on Monday. Sometimes the recipient of a Bone Marrow Transplant will experience their donor’s allergies. I had allergy tests done, which confirmed that this has happened to me. I am no longer allergic to ragweed and cockroaches. I am now allergic to one type of grass, several weeds…and cats. This is the worst possible news that I could have received. I am completely devasted. We have several cats and there is no way that I am rehoming any of them. They are my family. I now take liquid Zyrtec once a day. We’ll see how that goes. This might explain the chronic cough, runny nose and phlegm that I have had since 6 months after the transplant.

As always, things are bitter sweet. Thanks to the donations I’ve received, I was able to order my sclera lenses on Tuesday! They will take 7 to 10 days to make. It will be difficult getting used to them, but if I am to, they will be a game changer. No more eye drops every couple minutes while they’re in. I won’t be able to sleep in them, but I can wear them for extended periods of time while I’m awake. Thanks again for all the shares and donations!

This week coming up I am going to schedule a dental cleaning and x-rays. It will be nice to get my teeth taken care of.

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!


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.

Blood / CBC / Dr Appt (UNMC) / Platelets

White blood cells: 0.1

Hemoglobin: 7.3

Platelets: 1 (no count done after getting platelets, UNMC’s blood bank did not order)

Absolute Neutrophil Count (ANC): No ANC count done. With the White Blood Cells at 0.1, we can assume that the ANC is also bottomed out


After one month of crashing blood counts and one week of chemo, my blood counts have finally bottomed out. I am baffled at how I can still brush and floss without anything in my mouth bleeding much at all. I had some mild headaches over the weekend, but nothing bad enough that needed Tylenol. Low hemoglobin also causes shortness of breath and fatigue, which I was definitely feeling.

Everything at UNMC was very organized and efficient. I spent a fraction of the time there that I would have at Immanuel, and was pleased with the switch. Here’s how my first day went: port accessed, blood draw, appointment with Physician’s Assistant (and my Case Manager), 2 units of platelets and 1 unit of blood in their Treatment Center. I was there from 2:00 pm to 9:30 pm, which is an excellent amount of time. The blood and platelets can’t be given too fast, so there is no rushing those. I bought a wheelchair from Craigslist (for only $40!) before my trip to PA in December, and we got to test it out for the first time. Of course it snowed 7″ the night before, so that made this an extra fun day. The wheelchair worked out really well, and I’m glad I bought it. With the level of fatigue I have, there was no way I could have walked the distance through the hospital. The Treatment Center is not as private as the rooms at Immanuel, but allows the nurses to keep a closer eye on the patients, minimizing their time there. Not a bad tradeoff. My Case Manager also printed me a copy of my monthly calendar, outlining everything I need to come in for. This was extremely helpful, and priceless to my husband!

CBC / Dr Appt

White blood cells: 1.4

Hemoglobin: 10.6

Platelets: 6 (18 after getting platelets)

Absolute Neutrophil Count (ANC): 0.7

My results came back from the biopsy I had done. 35% leukemic cells. Click here to read details. My doctors at Immanuel Medical Center asked UNMC which chemotherapy medications to give to me, and chemo is set for the following week. How they managed to get away with not admitting me for chemo is beyond me. I’m just very thankful I was able to come home and sleep in my own bed…although I could have used 24/7 hospital care.

It was also mentioned to me that Immanuel Medical Center is out-of-network for my new Blue Cross plan. I was so focused on securing health insurance that would work seamlessly with my transplant that I completely forgot about this. I contacted to UNMC to switch over to them beginning in February. I think it’s time they manage my care directly instead of through multiple staff at another hospital. January and February will be an administrative nightmare, but after those months my insurance should cover everything 100%. That is one relief among all this. I can even begin to express how thankful I am for the donations that have come in. For the first time in almost a year, I can focus on my health CARE, not the insurance!

My husband and I have pretty much been non-functional since the day I had the biopsy done. After this news, any motivation that we had to do anything was completely gone, not to mention that physically I’m not feeling well either. We’re blown away by the waves of bad news and bad luck through all this. I really want to get back to some sort of normalcy, hopefully sooner rather than later.

CBC / Dr Appt / Platelets

White blood cells: 1.9

Hemoglobin: 11.5

Platelets: 10 (26 after getting platelets)

Absolute Neutrophil Count (ANC): 1.1


I found out this day that the hospital doing my transplant (UNMC) declined my financial assistance application. This means that I am required to pay 100% of any deductibles, past due balances, or any out of pocket expenses that I incur there. I can’t get a freaking break. UNMC ordered my current team of doctors at Immanuel Medical Center to do a bone marrow biopsy ASAP. It was scheduled for January 16. My blood counts should not be dropping like this, and we want to see if I am even still in remission.

CBC / Dr Appt

White blood cells: 2.2

Hemoglobin: 12.2

Platelets: 15

Absolute Neutrophil Count (ANC): 1.1