Hickman scheduled to be Removed on July 2, 2015

Todd with Hannah Lewis on graduation day

Todd with long-time friend Barry Wideman

It is hard to believe that it has been six weeks since Todd has needed a blood transfusion!  The AG-221 has been an answer to prayer!

We went up to Cleveland Clinic on Thursday, June 4, 2015, for Cycle 2, day 15 testing.  It was an good day.  Todd had his blood work drawn, an EKG done, and we met with his Transplant Doctor to discuss his progress.  Unfortunately, they were not able to get  his Hickman Central Catheter scheduled for removal on this visit, as previously hoped, but they did it scheduled for July 2, 2015, which will be Cycle 3, day 15, with limited testing.  They will put in a port under the skin on his left side of his chest instead.

The blood work was great!  Todd's hemoglobin climbed to 9.6; his white count to 2.59; his ANCs to 2.18; and his platelets (which have been lagging behind) to 43,000.  While only the ANCs are considered within the"normal range," the counts are still low overall, but they are so much better from where he was before he started the drug!

The last bone marrow biopsy was a little confusing, with the blasts showing at 5%.  Just 15 days prior, they were around 0-1%.  The doctor reassured us that there was nothing to be worried about.  Todd's counts are not necessarily increasing, but rather, this is typical of taking a sample. It can be off by a few percent each time.  She still considers the disease as "stable" and Todd having a "hemeotological response" in the blood with the drug.  Todd's EKG looked normal, and the only side-effects have been nausea, some fatigue, and high bilirubin which has caused some yellowing of his eyes.  It is hard to determine whether the fatigue is actually from the drug or from his disease.  Although his hemoglobin is high enough for him not to need a transfusion, it is still below normal and can cause fatigue.

He did lose more weight (a few pounds) from the last visit, which concerns me.  The doctor was mildly concerned and discussed his nausea and eating habits.  They are not worried, but reassured him that he can eat whatever sounds good to him.  Since his transplant he has lost over 30 pounds and a lot of muscle mass.   

We were blessed enough to be able to stay at the Hope Lodge there in Cleveland, which helps cut our expenses tremendously.  The staff and facilities are awesome, but we have had a few issues with some of the other longer staying occupants who are not as happy with anyone new disrupting their "authority" or routine.  Which is really a shame.

Personal notes:
We had a successful graduation party, although the weather was cold, windy, and a bit wet.  It is hard to believe we have two out of high school and one going into high school!

We've had our house on the market now for about two weeks.  We have lowered the price once to create additional interest and show that we are motivated to sell.  We have had a few showings, but I find myself anxious with the waiting.  Waiting for calls, waiting for showings, waiting to sell.  We can't look for a new place without selling our house.  All we can do is pray and wait.  God has answered prayers in so many other ways, I know this one will be answered in his way and timing too.

Ellie leaves for her 8th grade trip to Washington DC in the morning.  We are blessed that she received a partial scholarship by the travel company, World Strides to be able to go.  We also received word from the Cleveland Clinic Foundation that they are going to pick up a few more months of Todd's COBRA health insurance premiums.  I think this was facilitated by a social worker who came into Todd's room on a prior visit, asking how we were doing, and what needs we had. 

We are so grateful for all our blessing and appreciate your prayers and support as always. 

Intimate relations post-bone marrow transplant

Oftentimes, I begin writing a blog with an idea of what I want to say, when instead I start typing and something totally different comes out.  Today is one of those days!  I wanted to only give an update on how Todd was doing, but then the issue of intimacy came to mind.

At yesterday's treatment appointment (Day +41), Todd's blood work showed that his platelets went up to 50,000 which is a milestone than many patients and spouses look forward to reaching.  No intimate sexual relations are allowed with platelet counts under 50,000, so this is a positive step in returning back to a normal life.  Cancer can put a real crimp in married life or with any intimate relationship.  Chemotherapy drugs and side effects can be transmitted through intercourse. Many patients have had months of chemotherapy prior to transplant, making this a concern for a long period of time.   I can't speak from a female with cancer's point of view, but according to the Cleveland Clinic's handout on sexuality post-transplant, many women experience vaginal dryness and/or changes in hormones.  (Cleveland Clinic Foundation, 1995-2012).  According to a Danish Study reported by the MDS Beacon, there is also research that suggests that some transplant patients suffer from some type of sexual dysfunction, including increased erectile dysfunction in men. (MDS Beacon, 2011).

While this is a personal subject, it is an issue that must be addressed.  Regardless of any prior birth control measures, condom use is recommended post-bone marrow transplant to prevent transmission of dangerous medication side effects to the spouse, and to prevent even the slightest possibility of a yeast infection. (BMT patients are highly susceptible to any kind of yeast infection anywhere in the body). To make light of the situation, it was funny to be 45 years old, married 23 years, with Todd having had a vasectomy 10 years ago, but still having to buy condoms!

Both the BMT patient and the spouse can have a mixture of fears and feelings when it comes to their intimate relationship.  After recently speaking with another wife of a transplant patient, the lack of sexual intimacy for months can bring feelings of sadness and loneliness.  Being the caretaker, the spouse often feels more like a nurse of a fragile child instead of an intimate spouse.  Kissing alone can be scary for the spouse, for fear of spreading the simplest of germs.  For the transplant patient, stamina, fatigue, and overall energy levels are low to begin with; thoughts of intercourse can be more challenging. Some experience sexual dysfunction or for women, vaginal dryness which can add frustration to the situation.  (MDS Beacon, 2011).  Then, there are self-image issues to deal with.  The loss of hair and/or weight/muscle, can leave the patient feeling less sexually attractive.  

The good news: For most patients and spouses, "This too shall pass."  As blood counts comes up, energy levels come up too.  Once platelets reach 50,000 or greater, sexual intercourse can resume when the patient feels ready for it.  Hair re-growth and weight gain will eventually return to normal adding self-esteem along the way.  There are many medications that doctors can prescribe for dysfunction or hormonal issues.  Patience is key!

For more information:

Cleveland Clinic Foundation (1995-2012). Resuming Sexual Activity after Bone Marrow Transplant.
https://my.clevelandclinic.org/health/treatments_and_procedures/hic_Bone_Marrow_and_Transplantation/hic-resuming-sexual-activity-after-bone-marrow-transplant

MDS Beacon (2011). High Rates of Sexual Dysfunction. Retrieved from: http://www.mdsbeacon.com/news/2011/09/15/high-rates-of-sexual-dysfunction-reported-after-stem-cell-transplantation/