Monthly Archives: October 2009

OCTOBER- still in remission & Shane’s deer hunt

Hello everyone, we haven’t stopped blogging we have been living life. We’re trying to get back to as normal of a life as possible. I still will keep everyone updated as things happen, tests are done and so on.

This month Mark has been doing tests like the bone biopsy, MRI’s and blood work to make sure he is staying in remission. This will happen every three months. He still will be going to the Huntsman for his treatments of valcade and Dex every week for a year, this is his maintenance. We seen Dr. Zangari yesterday (10-30-09)for his results and I am very happy to say Mark is still in remission and doing so well that some of the bone lesions are repairing themselves. This is rare but they are seeing more of it. He has been on a medicine that makes him grouchy, boy I am ready to run out the door some days. Doc changed it to a lighter dose we will see how that works. He also developed a rash that is called seborrheic dermatitis that he is being treated for on his face. Shhh its sensitive skin, but I didn’t tell you that.

Mark has gotten hair in the last six or so weeks! So much on is face he can’t shave fast enough.

Mark and Carlos 9-6-09

10-09

10-09 No they are not Halloween pictures

Now I just realized I have left Shane out of the blog for October. Shane went to Grandpa Ken’s for the deer hunt this year like every year. Joe and Shane went up on the mountain Saturday morning and hiked around looking for the big one. Afternoon came around and Joe had to go home. Shane asked Grandpa if he could take the four wheeler up to the ponds above their house to look for deer. Shane had only been up there a few minutes when he heard shots. Around the bushes came a rhino with a couple of people. They asked Shane if he was hunting, Shane said yes. These people told him to come with them down in the brush that there is another one with the one they just shot. Sure enough there it was, the guy kept telling Shane to shoot. Shane was not quit sure it was a buck, but the guy kept telling him to shoot. He did, he got it. They went down to get it and on the way Shane was calling Mark at Grandpa’s (yep that is how close they were to home, he had cell service) Mark is thinking how are we going to get this deer. Mark can’t lift and Ken just had knee surgery. Just then Travis and Brooke showed up at the door. Quickly they all headed up the road. The nice men that help Shane shoot the deer had already cleaned it for him and were heading off with their deer. So Shane got his first deer with the help of strangers. I would like to thank them for being so kind to my kid. Most people would not have even stopped.

Shane’s first deer (my mighty hunter) 10-09
Poor little 2 point
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POST #9 – Reflecting Back: My Diagnosis Story

I’m writing this on October 18, also known as Day +5 after transplant. Today is a good day and I feel in the mood to type. The past 2 days have been ok, and since today is better than yesterday, thought I’d get in some more blog fodder. I”m propped up in a recliner in my room, with my sister’s Sony Vaio laptop a buzzin’.

It’s interesting being here and learning about others with cancer. Hope Lodge, the Cancer Society owned facility where my sister is staying for these two weeks to be with me during the day, is a place of relaxation and story-learning. Family members and well as cancer patients receiving day treatments can stay in this full amenity homey lodge while visiting Hershey. My sister has met several family members of people who are having their care at Hershey. Again..no matter what happens in my life from this point forward connected to cancer or anything else, I feel so lucky, words cannot express.

The first question that people ask me when they’ve learned of my status, is “How did you find out that you HAD this??” (multiple myeloma). I’ve done a Cliff Notes version of unraveling my multiple myeloma story. For those of you who have heard this.. feel free to skip to Post #10.

Long ago and far away in March of 2009, I went in for a blood series with my primary care physician.. cholesterol, etc. and I was anemic. Slightly anemic. I felt absolutely fine. I was not tired, no pain, no bone aches, no nothing.

In fall of 2008 my GYN shared with me that I was just slightly anemic, “.5” below normal..I believe I was 10.5 where normal was 11 of my hemoglobin, if I recall correctly. Understandably, she was not overly concerned as tons of women can be anemic by this tiny bit. The suggested was to take an over the counter iron supplement, which I was ready to purchase after our conversation. I spoke with the pharmacist regarding the name of suggested projects, and she shared that “..are you aware that these may make you very constipated”. I thought.. OH GEEZE! It was not a welcomed state to be in for various reasons..so I said to her, “How about if, first, I’d load up on spinach and red meat and see if I could pull out of my anemic state with doing that, versus taking one of these products? So I self-decided this is what I’d do.

A few month’s passed and it was time for me to have regular blood work done for cholestral, etc. through my primary care physician. I had forgotten to have it done for a while (like, a year).. so I thought now, March, was a good time to do this, and it’s how the ball got rolling.

I went to my PCP for the bloodwork. After my blood series came back “fine” except for being anemic, and I shared with him about my prior knowledge of beng anemic..he checked my counts last fall and now, I had now dropped a full point..so I believe I was at 9.5, down from 10.5. That is not normal, so I learned. “Well, your b12 and iron are fine..so something else is causing you to be anemic.” If my memory serves me correctly, it was then that I asked him what can cause anemia that could be concerning? Multiple myeloma was in the possibilities discussed, which was fine, well, fine because it was explored verbally in our conversation, it was not yet an “it” factor. I tried to wedge into the conversation that “Gee..couldn’t this anemic state just “be me”? ..or, how about that I’m probably peremenopausal? Or.. or.. or.. My PCP smiled and said, “well, anything is possible..but, “I want to investigate and vampire you a bit and do a big series”. I agreed of course. Those results came back within a week or so. I went back to his office and he had that “look”, which in 15 years of seeing him and not having any out of the ordinary issues, that “look” was a bit different. He said something like.. “there are some things present in your blood that indicate something is going on”….and as the discussion continued he said it was time to referred me to a hematologist-oncologist specialist .. and did I know any at my hospital where I worked? Well, sure. We agreed on a name and he PAGED him. I thought hmmmm.. PAGE vs. PHONE.. not good. My physician said, “I have to leave for a conference tomorrow…but I want this all buttoned up with the oncologist before I leave.” Oh geeze. Maybe I was obsessing—whatever. I believe the oncologoist prescribed yet another blood series to be conducted & turned around rapidly. Then when my oncologist delayed the start of his vacation in order to meet with me regarding his blood series results, I knew I wasn’t in Kansas any more.

I had already Googled endlessly about MM and the next few days. Multiply that by about a trillion, and that’s how much my sister was researching MM. We wisely kept my mother in the dark, as, we didn’t have face-to-face 100% confirmation yet..why pass worry that is not confirmed?

So, as I was gathering the entire scoop on MM from my oncologist, I asked my sister to join me about 20 minutes into our chat.. even though I remained calm and his words were resonating based on some of what I found through research..it was still a lot to take in. My sister took copious notes & asked questions based on what she knew through her research, which was voluminous.

As luck would have it, 8am the next day there had been a cancellation for a bone marrow biopsy and I was sliding into that vacant spot! That would be the final “confirmation” of the condition, and, would also show more. I also had a Pet Scan.. (or a bone scan? memory fade..must be my current drug load) …a painless xray of my entire body. It revealed a few small lesions in my skull..which wasn’t too bad and pretty typical. At least my bones didn’t look like a dalmatian.

The bone marrow biopsy was interesting. I had read up on what it was like, and it wasn’t too bad really. It was weird and uncomfortable vs. just painful. Local anesthetic injections and conducted by a physician who’s done about 10,000 of them, literally, made me feel ok.

Always inquiring about what’s going on during a procedure..[hey, when someone is sticking a needle in your bone, you’re focused on every second of the experience..] ..I asked him “This procedure must be challenging when a patient is obese or morbidly obese? ”.. he almost paused and said “You have no idea”.. and went on to say that in some cases, the sample must be obtained from the breast bone.. a place of least fatty tissue.” Ugh. I was glad I’ve kept myself in relatively fit condition…but I suddenly I wanted to jump off that table & sprint to the fitness center.

The biopsy was conclusive. Multiple myeloma was now part of my life, but not my life.

I also learned my chromosomes were “good”. I had not at that point realized why my oncologist was so happy as he delivered that piece of news. I know now. I have the most common form of multiple myeloma. Yeah! I was prescribed three medications. (1) Dexamethazone or decadron, a steroid (2) Revlimid, or lenalidomide, a med that was found to attack MM when coupled with DEX (3) zometa, a bone builder, similar to what Sally Fields wails about on TV, boniva.. this med will be a once per month I.V. drip.

SHOCK AND AWE

I purchased DEX in our hospital pharmacy. I was informed that Revlimid would be shipped to me directly. Fine. So I had to begin taking all 3 meds on a Monday. The Thursday before that day, I had a phone call at home from a company called “Biologics”, the distributor for Celgene, the Revlimid manufacturer. A very friendly and helpful woman said to me “I understand you’re starting Revlimid soon?” I said, “Oh yes, Monday!” She continued, “We’d love to send you your prescription, however there are a number of forms to be completed and you need to take an online survey about this medication as I does have significant side effects for women who are still in their reproductive years, and it also addresses birth control.” (oh LORDY!)

So, of course, I would go ahead and do what needed to be done, surveys and all, just so I can get this med on time to start taking it! Upon me finishing the highly personal surveys, she and said, “How would you like to pay for this?” I said, well, I believe my insurance will cover it, and she then contacted my insurance co. and was told I could submit paperwork later. However, I needed the medication NOW to begin it on Monday. I said, “Just send it along to me.” She said, “We can only ship with confirmed payment. How would you like to pay for this?” I realized then it was my turn and I needed to anty up. I said, oh, ok, do you accept a personal check? Visa? She said “No personal checks. We take visa, MC, or a bank check…and, this is a very costly medication.”

Hearing that, I was envisioning maybe $1,000 thereabouts. I said, “What are we talking here for this prescription for 21 days of pills?” She replied: “$7,555.84.”

If you haven’t guessed, this was the “shock and awe” part. I must have looked like one of those cartoon drawings where the eyeballs bulge out of a character’s head, or what comes naturally to Jim Cary in his roles. I said, “OH!” and oddly, burst into tears. That wasn’t because I couldn’t pay for it, but it was the simple shock of it all. I had managed everything for the first week really well….though I was still on emotional Bambi legs, then, this hit. I put it on my visa card as it was the quickest and medication arrived FedEx the next day. I was at the office and someone has to sign for a FedEx package so I wrote an email to everyone in the suite stating “To All: a $7,500 medication is being delivered to me today..please sign for it & page me when it arrives”.

It took several weeks for this to be ironed out and I was thrilled when I was told Revlimid would be fully reimbursed and covered under my insurance.

I was on revlimid and DEX since April 2009 up until late August. No extraordinary side effects. Revlimid was 21 days on, 1 week off. I believe it kept my blood pressure happily low, thus, no meds needed for my hypertension—a condition for which I had been taking medication for over 10 years.

DEX, 40 mg every Monday, became predictable as far a side effects. Hyped up on Mon/Tues an difficulty sleeping, but melatonin helped. Tuesday, my face would turn red in my cheeks and I’d look oh-so fit and sunned. (sigh) but it would go away the next day. Then there was the Gain-5-lbs-in-one-day phenomenon. It’d melt off by Saturday..only to start that and the rest of the side effects again on Monday. But.. those two meds made a big difference in the numbers that were being closely monitored by my hematologist oncologist over the spring and summer.

I visited the the Hospital of the University of PA’s MM program, as well as Penn State Hershey’s program as potential locations for the transplant process. Both are excellent. I’m very very happy with where I am right now.

So that’s how this all began for me. What a year, eh?

Want to read earlier posts? Click below on “Older Posts” and it’ll take you to the top of this page. See older posts when you click on September or October. They’re in numerical order.


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POST #8 – Let the Games Begin

Today is Wednesday October 14. Even though this Posting on my blog will appear much later, I wanted to capture my experience before it faded. This Posting is about my first 3 days at Penn State Hershey Medical Center, of my two-week stay, including chemo and transplant.

I was all set for my Monday October 12 trip to Hershey, or so I thought. I woke up at 3am Monday morning with a migraine-level headache of a LIFEtime. My conclusion was, perhaps pent up stress and anxiety had arrived and packaged itself in the form of a headache that included being physically ill, if you get my drift. All I knew was I was in 100% agony on my Important Day. Hershey called with the preferred estimated time of arrival & we agreed on “before noon”. I shared that I was suffering with a wicked headache and was told nicely “well, we have wonderful drugs here that can help”. That was the only smile I managed that morning—I was determined to get to Hershey in record time.

So, there was my sister, driving me to Hershey in her red PT Cruiser, I was sitting in the passenger seat with my red & black scarf pulled over my face to keep the sunlight out. For anyone peering the window as they drove by, it looked like some wacky kidnapping. We arrived, and were told beforehand to walk right upstairs to the unit without need to stop at the main desk. As my sister did the valet parking thing, I waited inside main entrance doors, standing by the beautiful new hospital map, with my head in my hand, obviously in pain & probably downright scary looking. I was now a patient in pain. People were staring at me. I could care less. As we approached the elevator tower, I was losing ground—I HAD to get up to that 6th floor for the DRUGS or I’d know the reason why. Just like in an annoying scene from a movie or TV show, the elevator took forEVER, then finally we entered one of the three that was finally free, and four other people had to re-open the doors to hop on. I tried to say calm, thinking.. “hmm..they too have somewhere to go, to heal the sick.” Then, a final person had to also enter our elevator pushing a huge cart of equipment. I said out loud: “I’m not moving” and if my lip curled, it did then. The cart-pusher did end up wedging it on our elevator though, and we ascended, stopping at every blasted floor. Jesus. Just get me up there, please.

So, on the 6th floor we walked down a long hallway,and around the corner was the Cancer Institute unit behind double doors. We were met outside the doors by a nurse holding a chart and she said “Are you here for room 6127?” I said, ”I’m not sure about that, but I’m Jody Millard, I’m here for the next two weeks – TAKE me.”

As I got acclimated to my room, imitrex was ordered, but was slow coming up from the pharmacy. I had already been ill repeatedly that morning and I was certain that pattern would continue. My physician and others came by shortly after my arrival and we discussed the headache. He ordered dilaudid, an opoid. Yep, not-your-father’s-painkiller shall we say, as it was a bit higher than morphine (or, was that me?) Anyway, I must have really indicated how much pain I was in.. and, he was concerned. As it flowed into my catheter I felt a woozy rush and my headache went away in what seemed like 90 seconds. LOVE IT! Even though it did make me ill, it was not a big deal. I HAD NO PAIN.

So, I began to receive my medications prior to chemo, more anti-nausea meds. I was already in a nice woozy state so I welcomed anything into that catheter, bring it on! Chemo started at 5pm. Thirty minutes prior, I had to chew on crushed ice. This I’m told would decrease the percentage of the severity of mouth sores from 75% to 25% in about a week or so from now. Oh goody. My mouth was numb by the time the chemo started, so, even though the chemo was strong—with all the prior medication– it was manageable. My episodes of illness (aka vomiting) weren’t bad. Actually, it’s unlike being ill from a virus or food poisoning, . It comes upon you rapidly, it “happens”, then, it’s over. So, my day had about a dozen “episodes”..my pink basin and I were friends by then, but I bid him farewell by evening. Little did I know I’d be marrying that basin, or so it would feel, in the next 13 days.

I didn’t sleep at all on Monday night, but oddly, I felt ok. Having never stayed in a hospital overnight before in my life, this was baptism by fire. Overnight due to cancer, not a broken limb or some other thing. But—the overnighting experience was fine. The sleep loss was probably due to steroids.

While awake, I thought about writing this posting. I thought about changing my furniture around in my home to accommodate my new flat screen TV. I thought about redecorating other peoples houses. I thought about work and was going on. I thought about my cat being tenderly cared for by friends, I thought about how great it was that I was here and everyone knew what was going to happen next. I thought about how lucky I was.

Tuesday (called Day 0 in Transplant Land) was the day that my stem cells would be infused into me. So the troops entered the room at about 11am. The person from the blood bank wheeled in a dry-iced container with my stem cells in 2 bags. A triangle of conversation took place to triple-check the accuracy that my cells matched me, each person read my wristband/label on cells/label on order which was most all reassuring. They were indeed MY cells, the same ones I had spent 10 hours “giving” at Hershey just 3 weeks prior . The nurse practitioner actually did the infusion directly into my catheter with my physician present and a second nurse standing by and my sister as my guard.

The infusion was another weird experience, but again, manageable.

Because my stem cell collection was “good”, I only had two large syringes of stem cells destined for me, about 2 million cells. The team shared that sometimes an infusion requires 15 or 20 syringes for one patient, based in part on how well the collection had gone or if ones’ stem cells were not strong due to prior chemo or other reasons—more vials are needed for the same final count.

Anyway, these were thick sausage-wide syringes. Eeeew. The Nurse Practioner began the process and I was forewarned about experiencing things like nausea, shortness of breath, feeling overheated, etc. As she pressed my cells into my catheter, I instantly felt like a low ember fire was making its way through my body. At first it was heat, then, it was more like a peppery feeling in the back of my throat. It felt like someone put a bit of lite Tabasco sauce or pepper in my throat and I needed to cough for no real reason as nothing was actually there of course. It wasn’t comfortable. The idea of having 20 syringes would be quite a challenge, but of course I’d endure it if that was what was needed. I’m grateful that it was just two. I had been told there’d be an aroma of creamed corn, something I never did end up sensing…but others could. My sister confirmed even hours afterwards that yes, it was in my room wafting around. Never knew it. For about 20 minutes, I had 10 eyeballs (though very friendly eyeballs) staring at me in silence as the NP was infusing me, which added curiously to the experience . In hindsight, the eyes made it more comfortable as they were all focused on me.

The infusion ended. I felt unsettled the rest of the day on Tuesday, no other way to describe it. I needed anti-nausea medication to enable me to sleep and I did so.

Wednesday “Day +1” (the day I’m writing this, Oct. 14) .. has been terrific! I feel super! I can eat (a little) and my sister and I did two 20 minute walking laps around the unit. It felt great to be out and about, even if it wasn’t far from my room, it was great.

My infusion NP stopped by and updated me with detail about “what’s next”. That was a boatload of information that was a bit new. I learned today that about 6 days from now, my white blood count will be dropping and it’ll drop to it’s lowest point. My numbers will be bottoming out , though with my stem cells, they’re fighting for me at the same time. I’ll be most susceptible to infection and from then, all will start to rise. Interventions may include continued need for acid reduction for my esophagus (as chemo weakens cells that reproduce the fastest: mouth, esophagus, mucus membrane areas) , neupogen to build blood cells, and possible blood transfusions. It is expected that I may get some kind of infection and then I’d have chest xrays, maybe a CTscan to find out what’s going on.

This concludes my update on my first 3 days. Chemo and transplant are now officially “history”. More stuff to come behind the remainder of my stay, but I’m game. Life is bettering!

Want to read earlier posts? Click below on “Older Posts” and it’ll take you to the top of this page. See older posts when you click on September or October. They’re in numerical order.


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Want to EMAIL ME PRIVATELY? Go to my small photo at the upper/right on this page and click on VIEW MY COMPLETE PROFILE. You’ll see CONTACT: EMAIL in a box, on the left. Click on EMAIL.

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Busy Wednesday

Whose idea was it to schedule an 8:00 am doctor appointment? It was hard to get going this morning! I apologize to all you responsible, early people. I’m out of practice with being early. Doctor Garley says my blood test numbers are a little low, b…

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My Oh My Multiple Myeloma 2009-10-27 16:59:00

Somehow I managed to catch a cold a few weeks ago. It was the knock you off your feet and put you in bed kind of cold. Fortunately, it wasn’t Swine Flu, but it had many unpleasant symptoms. I couldn’t bear the look of food, much less eat it. This c…

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Quick Update

Super quick update before I head down to my meeting.Engraftment happened Sunday! She’s no longer neutropenic and was released from lock down yesterday! No more extra fluid bag to carry around either.I think she and daddy went out to celebrate last nigh…

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2009 CQWW SSB DX CONTEST

I had an absolute blast working the CQWW SSB DX Contest October 24th-25th! Below are my results which I thought amazing for only 8 hours of actual on-the-air operating time. MY CQWW SSB DX CONTEST TOTALS 20 Meters QSO’s:94 Countries (Not includi…

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STEM CELL TREATMENT BEGINS!

Today was my first day of the Stem Cell Treatment process at Mayo Clinic. The day was filled with tests and examinations. My day started at 0730, I reported to the Transplant Center and picked up my appointment schedule and instructions. My next stop was the lab for urine samples and blood draws, there were […]

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Day 9 & 10

Just arrived at the outpatient center at St. Francis for weekend labs, fluids, and doc appointment. We’ve been here for 45 minutes already and she’s only had her BP and weight taken. No labwork yet which means the doctor will be here before the lab res…

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Elbows off the Table!

Breaking your arm at the hospital is much less of a hassle than doing so getting into a kayak at 6:30AM a hour+ ambulance ride away. Lu and I were killing a bit of time eating salads while our dear friend upstairs chatted with her Doc. It was an awesom…

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