Day 100 - December 22 2011

jm and Jani Day 100 December 22 2011 

My daily Fragmin 12,500 u injection in my abdomen, December 22 2011

Day 99 - It's a MAC - December 21 2011

I have moved from the darkness of the PC world to the light of a new Apple MacBook Pro. Now if I can only figure out how to make it go!!



My Bard Power Port site is healing SLOWLY - still have pain right over the site 6 days after it was removed on December 15 2011. That crusty looking stuff over the incision is dried up glue.

 This photo below shows both the Bard Power Port site on my right (left side of photo) and Trifusion Hickman Catheter site on my left side (right side of photo).

I received Zometa on Monday, December 19, 2011. I seemed okay on Tuesday, December 20, 2011, however, today I ACHE all over in my bones - especially my hips, back, and shoulders. Probably, the delayed response due to the fact that I also received Dex 20 mg on Monday, December 19, 2011.

Gas Prices in Greeley, Colorado are dropping below $3/gallon to 2.959 December 21 2011

 

Day 98 - Neuropathy - December 20 2011

Well, I've started to get a bit of neuropathy on the fingertips of my left hand that I experience as numbness and some tingling. I've had 3 weeks of intravenous Velcade 1.7 mg/Dex 20 mg with one more week to go (December 26th) and I finished 14 days of oral Revlimid 10 mg yesterday.

I've started back on the L-Glutamine protein powder which might help. My Fort Collins, Colorado oncologist, Dr. James Moore suggested I take L-Glutamine Powder 10 g dose 3 times a day when I was getting my induction chemotherarpy before my stem cell transplant. I did not experience any neuropathy in my fingers at that time. I mix the powder in a bit of grape juice and it is easy to get down.

I'm also more constipated this round than before. I've taken 4 Senna S and 2 Magnesium 500 tablets each night and have had very little results. Tomorrow, I might have to drink the Miralax Papaya Banana Apple Protein Shake that Danny Parker gave me the recipe for. For me, constipation is the worst side effect.

Day 98 - Savoring - December 20 2011

Savoring my continued breakfast in bed each morning delivered by my best sister and caretaker EVER, Jani. When I head home to Mackay, Idaho next Tuesday, December 27 2011, I'll be getting my own breakfast and I'm pretty sure it won't look like this - but, more like instant oatmeal!

Day 97 - Maintenance Chemotherapy Administration Month 1 Week 3 - December 19 2011

Jani and I left Greeley, CO for UCH (Aurora, Colorado) at 5:40 AM in the dark. I had fasted for 12 hours because I was having a lipid panel drawn this morning.
I was anxious because today was the first day that I didn't have either a Trifusion Hickman Catheter or a Bard Power Port for intravenous access. From now on, all of my blood will have to be accessed from peripheral (from my arms and hands) blood draws.
My blood draw went well from my left arm with only one poke by RN Regin! My anxiety was unwarranted.
We waited in the UCH Infusion Waiting Room while my blood tests were being done in the lab.

My blood values continue excellent. My hemoglobin is normal at 12.8 (norms 12.1-16.3); white blood cell count 5.1 (norms 4-11.1); and platelets are just a tad low at 142 (norms 150-400).

 My lactate dehydrogenase is normal at 173 (norms 98-192) - a test of inflammation.

 My liver enzymes continue a tad high which is probably due to the Fragmin Injections I take daily. Alanine Aminotransferase 60 (norms 0-47) and Aspartate Aminotransferase 35 (norms 0-47).

My fasting lipid panel turned out fantastic, which is hard to believe since I've been eating 2 eggs and ham EVERY day and plenty of steak since my transplant in September. My cholesterol is just 178 (norms 0-200); HDL is 72 (norms 40-60); LDL 84 (norms 0-130); Triglycerides 110 (norms 0-150); and something called Non HDL Cholesterol 106 (norms 0-160) which is your total cholesterol minus your HDL “good cholesterol. The Non HDL Cholesterol may predict your risk of cardiovascular disease even better than your LDL “bad” cholesterol. That’s because your non-HDL number tells you all the bad cholesterol circulating in your blood – not just your LDL cholesterol.  I do take Lovastatin 40 mg daily for high cholesterol.



After my blood tests came back, RN Laura started an IV in my left hand with only one tiny poke. She was awesome! I got my Dex 20 mg and Velcade 1.7 mg. So AGAIN, my anxiety was unwarranted.

 I was also scheduled to get Zometa 4 mg, but it was not on RN Laura's order sheet. So, after some delay, it was ordered and administered intravenously. I will get Zometa (bone building) monthly.

Arrived in the oncology clinic more than 1 hour after my 9 AM Scheduled Appointment. Didn't have to wait to long and was seen by NP Angie (who works part-time). She was great and answered all of my questions. She will be sending today's clinic visit notes to my new oncologist in Idaho Falls, Idaho - Christian Shull, MD. They have scheduled in intake appointment with Dr. Shull for January 4th at 3 PM.

NP Angie said that I should have repeat echocardiogram at the very beginning of February 2012 to monitor the blood clot in my heart. She said I could walk and even ride an exercise bike now. I will continue on the Fragmin for another month and then they will decide if I can go back to aspirin for blood clot prevention.

She agreed that I might be having break through shingles on the back of my right thigh and recommends that I take 500 mg vs 250 mg of Famciclovir during the month that I receive Velcade IV each week.

NP Angie recommended that I stop taking the fat-soluble B6 Vitamin, but continue on the water-soluble B12 vitamin.

I should NOT be around any children less than 1 year of age and cautiously around any other children for a full year after my transplant and after I receive all of my childhood immunizations in one year from the date of transplant. I cannot visit any home that has a wood burning stove for a year. Fortunately, I have electric and propane heat at my home in Mackay, Idaho. I will continue taking Bactrim twice a week (Monday and Thursday) for one year to prevent lung infections. I can have house plants now and I can water them myself. I will not be allowed to mow or do yard work for 1 year. I can vacuum now, but should wear a mask while doing it.

I will need to have monthly immunoglobulins, M-Spike, and free light chains blood tests. As long as these blood tests remain normal, I'm in remission. NP Angie cautioned me to watch for increasing restless leg and leg heaviness and aches which could be a Velcade side effect which would have to be addressed if they occur.

All in all, NP Angie said that barring the heart blood clot,  I've done "as good as it gets" with my

stem cell transplant and achieving stringent complete remission.

Stopped at Donna, Scheduling and made my follow-up appointment with Han Myint, MD on April 12 2012 at 1 PM. Dr. Myint left UCH today on medical leave (he is having an elective surgery) through the end of February 2012. I wish him the best of luck and hope everything works out well for him. Donna always gives me a warm hug.

So, I only have one more Velcade/Dex intravenously appointment at UCH on Dec 26 2011 and then I'll FINALLY be HEADING HOME TO MACKAY, IDAHO on Dec 27 2011.

We were gone 6 hours which is at least 2 hours longer than we should have been gone.

Day 96 - Good Friends, Good Times - December 18 2011

Tom and Shawn Egle came to dinner tonight. Such a good time. Shawn was diagnosied with multiple myeloma at the age of 52 one month before I was diagnosed at the at of 60. We are both being treated at UCH and Shawn found and contacted me through my blog. It has been wonderful to have her to share this adventure with me! And to top that off, we share the same birthday on December 8th!!

 Unfortunately, wearing my Tebow jersey today didn't help the Denver Broncos in their loss to Tom Brady's New England Patriots ~

Day 95 - 2nd Day Post Bard Power Port Removal - December 16 2011

The site of my Bard Power Port removal HURTS and ITCHES. I've continued to take 1/2 Percocet every 6 hours. Decided to go with no dressing, because even my Durapore Silk Tape is reacting to my skin.

Day 94 - 1st Day Post Bard Power Port Removal - December 16 2011

I just couldn't take the itching beneath the dressing over the site of the Bard Power Port today. I was instructed to leave the dressing on for 48 hours, but I had to to remove it. As you can see, after I lifted up the edges of the Tegaderm dressing, you can see that my skin was reacting.

The original dressing did not have a spot of blood it - so, I don't think it mattered that I took it off. My chest is not as bruised as I thought it would be. The horizontal incision is closed with dissoluble sutures and glue.I have quite a bit of pain in my chest wall and I'm taking 1/2 Percocet every 6 hours. They called from UCH Interventional Radiology today to see how I was doing. They said to call them back if the pain persisted beyond 1 week.

 My chest wall after the removal of the Bard Power Port on my R (left side of photo) and Trifusion Hickman Catheter on my L (right side of photo).

 I also think I'm having the beginning of a shingle outbreak on the back of my right thigh - feels inflamed and itchy at this point. Very hard to photograph. I took an extra Famciclovir 250 mg and I think that helped. I'm on Day 11 of 14 with my Revlimid 10 mg maintenance chemotherapy and just 2 weekly cycles of Velcade/Dex out of 4  - so, maybe that has lowered my resistance to shingles (varicella or chickenpox virus).

Back of right thigh

My January 2012 supply of Revlimid arrived via UPS this afternoon. I spent a lot of time on the phone yesterday making the arrangements with the pharmacy - this is going to be a monthly CHORE!

Day 93 - Bard Power Port Removal - December 15 2011

Jani and I made it down to UCH early. I was to check in at noon for the 12:30 PM Bard Power Port Removal procedure in Interventional Radiology.


First, we delivered Christmas goodies to Dr. Myint , the Nurses in the BIC, the Oncology Clinic Nurse Practitioners and Hank, the Transplant Nurse Coordinators, Donna and Derek in Scheduling, and the 11th Floor Inpatient Bone Marrow Transplant nurses.


Then, on to Interventional Radiology on the 3rd Floor of the Inpatient Unit. We were taken right back, given the warm blanket and told to wait. And wait we did.

I put EMLA cream (numbing) over the Bard Power Port site because they were going to numb the skin with xylocaine injections before they made the incision to lift the port out of its pocket beneath my skin. That's plastic wrap over the EMLA Cream. You apply the EMLA Cream 1 hour prior to the poking and it works great!

Nurse Practitioner Kendra consulted her attending physician about the blood clot in my heart and reviewed my existing MRI of my Heart, and 2 echocardiograms. I'm considered to be hypercoagulable (makes blood clots easily) and they felt that it was best to have the foreign body (Bard Power Port) removed to allow my body to resolve the blood clot in my heart. I'lll be on Fragmin (blood thinning) injections for at least 3 months. In addition, the chemotherapy pill that I take 14 days out of every 28 days has blood clots as a side effect...all the more reason to have the port removed now.


I was finally taken back for the 12:30 PM procedure at 2 PM.

Nurse Practitioner Kendra did the procedure. As with my Trifusion Hickman Catheter removal, a risk existed that taking the port out might "mobilize" the existing blood clot in my heart, but I didn't experience any problems. A lot of mashing of my chest wall and I'm absolutely SURE I'll be quite sore for the next couple of days after the xylocaine wears off. I was back with Jani in recovery by 3:15 PM.She was just starting to get concerned that it was taking too long.

 

Dressing over the former Bard Power Port site with Tegaderm since I'm allergic to almost every other adhesive. Click twice on the photo above and you can see how much thicker my hair is getting.


Our super nurse, Carolyn, did my vital signs a couple of times along with the discharge teaching (No shower for 48 hours and to call IMMEDIATELY for any shortness of breath or chest pain). Finally, at 3:45 PM, we were on our way back to Greeley in Bart (2006 Honda Pilot).


On our way home, I took a whole Percocet. About 20 minutes after I took the pill, I had a reaction like I was going to FAINT. I was just sitting in the passenger seat of the car doing nothing.  I was sweaty for a minute and then "the spell" quickly passed. While it was happening, I thought, "THIS IS IT - I'M DYING".  I don't know why I thought I could take a whole Percocet when I've only taken 1/2 tablet always before. Scared Jani too!


Now that I'm home, I seem fine - feels like someone punched me in the chest - not that I've ever been punched in the chest~~~~


My spirits are high --- I'm one more BIG STEP closer to being able to go home to Mackay, Idaho on December 27 2011 if the weather across Wyoming cooperates!!!!!

Day 92 - My Hair is Growin' - December 14 2011

Gas prices in Greeley, Colorado today at $3.069

Day 91 - A Yippee Kind of Day - December 13 2011

UCH scheduled my Bard Power Port removal for this Thursday, December 15 2011 - Yippee!

I'm going home to Mackay, Idaho on December 27th! My Transplant Nurse Coordinator, Lindsey, and Social Worker, Amy, are making all the arrangements with my new oncologist in Idaho Falls, Idaho, Christian Shull, MD. So, I'll finish out my first month of maintenance Velcade/Dex/Zometa/Revlimid chemotherapy and head home the next day. I've been gone since May 11 2011.

Yippee! The Prilosec 40 mg and Zantac 150 mg one hour prior to my Velcade/Dex yesterday worked magic and I did not have ANY acid burning in my esophagus and stomach like I had in Week 1 Month 1.

And, another Yippee! I bought a new 15 inch MacBook Pro laptop with all the same software in Apple versions today! They threw in a new printer and scanner for free. I went shopping fully intending on getting a new Dell PC, but I (well, maybe Jani twisting my arm a little) decided that if I was going to have to learn the new Windows operating system (I have Windows XP on this old laptop I'm using now) that I might as well learn the MacBook Pro way. They had to order my MacBook Pro today, so I won't get it until just before I leave for Idaho. However, they are taking all of my external harddrives (I have 4) and converting the files from PC to Apple in some way, so when my MacBook Pro arrives, I'll be able to read my many files. However, if my blog ceases, you can pretty much bet, I'm somewhere on the learning curve. Jani is a MacBook Pro user and I'm going to start taking some kitchen counter lessons beginning tomorrow.

Jani and I baked Gramma Rebein Christmas Cookies today for neighbors...and they turned out wonderful the first time...we usually can't remember how to make them each year --- but, we did good this year on the first attempt!