Archive for the ‘ Dental ’ Category

Been a rough summer

I have not been feeling well and have had an insane amount of appointments. I apologize for the lack of updates during this time.

Skin: After decreasing the prednisone, I began to have problems with my skin. My arms swelled up to the shoulders, my legs swelled from my calves up to the top of my thighs, and my lower abdomen swelled around my entire body. The skin in these areas became hard, tight, and thick, making it difficult to move. The skin is also lumpy. This has caused a great amnount of pain and discomfort. I have been diagnosed with skin GVHD (Graft vs Host Disease). Apparently this is one of the most difficult types of skin GVHD to treat. How is it treated? Photopheresis and anti-rejection meds. We moved me from monthly photopheresis to weekly and started me on Sirolimus, an anti-rejection medicine. The Sirolimus causes urinary issues, edema and abdominal swelling for me. It also gives me very shaky hands/tremors. Photopheresis is usually a 3 to 4 hour treatment, and is given 2 days in a row. In other words, each completed treatment is a 2 day ordeal. Per my GVHD doctor, decreasing prednisone too fast can cause the skin GVHD to spread. I had a very small amount of it unknowlingly prior to the prednisone decrease. I will begin seeing a dermatologist in a couple weeks. I have also just started a new medicine for GHVD called Jakafi. It’s been recently approved by the FDA for treatment of GVHD where prednisone failed.

Strength: I’ve also been going to physical therapy 2 days each week. My range of motion and strength are terrible, and many parts of my body are seized up, especially with the skin GVHD…for example, I can’t straighten my elbows or knees. I will begin occupational therapy in a couple weeks, which will address my hands. I was able to puchase a quad cane, which has been a great help. My knees still continue to give out if I bend them too much.

Eyes: My right sclera lens has been running the eye. I developed a cyst on my eyeball because of this, and have had a total of 3 lenses for that eye now. My warranty has expired, so the next one I order I will have to pay the $400 full price. My doctor is looking into having the lens vaulted in the section where it’s rubbing my eye.

Teeth: Pehaps the best news – I have begun to get dental work done, thanks to the donations that I’ve received! So far I’ve had 3 teeth pulled and 6 cavaties filled. Most of the cavaties were fillings that had fallen out of the front of my top teeth . I am no longer scared to smile. I have a lot more work that needs done, but it’s a good start.

Gut/Food: I’ve also been disgnosed with GHVD of the gut and put on a new medicine for that. It’s a steroid medicine that coats my digestive system. I’m also back on an acid reflux medicine. I feel a little better now that I am on these meds. Fortunately I have been able to gain weight, and I’m at a healthy weight again. I continue to have a very dry mouth and choke on just about everything I eat, so the eating has not been any easier, especially after having 3 teeth pulled.

It’s getting increasingly difficult to manage my meds and appointments. I’m up to about 20 medications, and I don’t even know how many specialists I am seeing. I can’t swallow pills, so they either need to be crushed or they have to be liquid. I have been sleeping a lot, and I’m back on pain pills, mostly for my mouth and legs. I spend a lot of time with my feet up because of the pain and swelling in my feet and legs. It’s quite unpleasant.

Of the donations that I have received so far, I have enough to cover one more set of fillings at the dentist and 1 replacement lens for my right eye. Anything that you’re able to send my way is greatly appreciated!

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.

Eyes, teeth, osteoporosis, allergies

Thanks to the donations I’ve received, I was able to get my sclera lenses on Wednesday. The moisture is extremely helpful; I am able to get away with very little use of eye drops while I have the lenses in. I think the prescription may need to be adjusted, and the right lens irritates my eye. Unfortunately the prescription is for distance, and anything that is close up is much worse with the lenses in. I have to wear my reading glasses most of the time when I have them in. One of the most difficult things is using the computer. In order to see perfectly, I have to be about 6 to 12 inches from the screen. Overall I am very happy with them, but I’m hoping some adjustments can be made. I have a follow up appointment on the 17th.

I had a dentist appointment on Tuesday. They took x-rays and gave me an exam. I was quoted $10,496 for the work that needs done. Unfortunately the dentist requires payment prior to work being done, and doesn’t mmake payment arrangements. The dental work must be done before I can receive medicine that will keep my osteoporosis from getting worse. Certain types of dental work can’t be done after I am on the medicine, as it would put me at risk for bone deterioration in my jaw. The medicine will be given via IV and will last for about one year, therefore it will not be as easy as stopping a pill prior to dental work being done.

The Zyrtec seems to be helping with my allergies, and I am still taking a daily pill, nasal spray and an inhaler for my lung and nasal problems. I am not 100%, but I do seem better.

My main focus going forward will be to eat more, gain weight, and gain strength. I am feeling extremely weak after the health problems I had in April, and I’m unable to do much of anything. My doctos still want to do more testing to figure out my choking issues, which continues to be a major problem.

Eyes and teeth

Eyes and teeth – 2 of my biggest problems. Thanks to the donations I’ve received, I can finally do something about these problems.

Eyes: i have ordered my sclera lenses, which I pick up this Wednesday. These lenses are a hard contact lens that I will put in each morning, and take out before bed. They are basically a bowl that is filled with a saline solution, which allows my eyes to bathe in that solution all day. If I can tolerate the lenses, it wil alleviate the need for constant eye drops while I have them in, and I should have improved vision. Lack of tear production has left me with severely dry eyes, which cause me constant pain and cloudy vision.

Teeth: I have scheduled an appointment for Tuesday (tomorrow). I will get x-rays and an exam to determine what is needed going forward. I’ve lost more weight, and I’m now below 100 lbs. Part of the reason for this is that eating is painful. I am really looking forward to getting my teeth healthy again.

Although I am no longer sick from Salmoonella, I am feeling the effects of being sick for almost a month. My strength is back down again, and I feel like I am starting out lower than what I was before I got the Salmonella April 1st (and I was pretty weak back then). It will take a great deal of work to regain strength.

Cats – I am extremely depressed that i am now allergic to my beloved pets. I am afraid to even be near them, and I feel like I am doomed just being in the house. Regardless of this fear, I continue to snuggle and love my pets, but I am washing my hands constantly. I’ve been taking Zyrtec for about a week now, and it’s hard to say whether it’s helping. I’m already on a nasal spray, an inhaler, and a pill for my breathing and sinus issues.

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.

Bone Marrow Biopsy #7 / CBC / Platelets

White blood cells: 0.8

Hemoglobin: 7.0

Platelets: 27

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

 

I received 1 unit of platelets.

 

Now for the good news…I went from having 35% bad cells to 2.5%. I am clear for transplant with anything less than 5%. This was the best news we had in a long time, I am back in remission after 1 round of chemo :)

The plan is to do one more round of chemo (same drugs I had for round 3, I did just fine with them!), another biopsy afterward, and transplant within one month of that biopsy (if the results are good). Prior to getting this next round of chemo, we really want my counts to come up more so I can get this dental work done. We’re looking at probably mid-May for transplant. More waiting…

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.

Dentist Appt

Yay, we now have dental insurance!

I have a cleaning this day, and I need to schedule a lot of other dental work to be done through the month. All of my dental work must be done before transplant. I found an excellent transplant survivor’s guide, page 22 explains how crucial dental care is before, during, and after transplant.